Medical Forum / Diseases and Disorders / Arthritis / August 2005
Humira
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Carolj52@webtv.net - 10 Aug 2005 18:53 GMT If Humira works,when would I be able to tell some differance? Also,would it start to work slowly if it does work? I took Plaquenil for 6 mos.,didn't help,I'm now on 20mg. Methotrexate, 10 mg.of Prednisone(7 mos, and it hasn't helped) Also 400mg of Celebrex a day.I'll be taking my 3rd Humira shot this Friday and can't tell any differance yet.Would appreciate any comments.Thanks! Carol
Smokie Darling (Annie) - 11 Aug 2005 02:11 GMT > If Humira works,when would I be able to tell some differance? Also,would > it start to work slowly if it does work? I took Plaquenil for 6 [quoted text clipped - 3 lines] > Friday and can't tell any differance yet.Would appreciate any > comments.Thanks! Carol Hmm, no one's answered you yet... Um, I'm not the best one for this. I took Humira for about 6 months, and it never helped at all. I began having a ton of problems, so was taken off of it. I ended up hating Humira more than I hate Prednisone.
I hope it works for you. I hate, hate, hate, Prednisone (in case you hadn't noticed, I don't like Prednisone <smiles>), but... has your doc not suggested increasing the dosage? I know that I would take 40 for 3 or 4 days, then reduce by 5 until I started having "significant" pain. Usually the 3 or 4 days was enough to give me relief. Ask your doctor about it.
Hopefully, someone who has had good effect with Humira will come along, just didn't want you to think you being "ignored".
Smokie Darling (Annie)
baino - 12 Aug 2005 17:23 GMT Hi Annie, my name is Robert and I'm from Scotland my experience on humira is as follows: -
I was accepted onto the anti-tnf progam in February and decided to choose Humira as it was 1 injection fortnightly, However, things went from bad to worse and I had a severe flare up of my RA and ended up back in hospital for 5 weeks. As it turns out the Humira failed to work and my RA hit me like wildfire again. I think it was due to the body not absorbing it, but it was'nt confirmed and I didn't ask. I could'nt move in bed as I was in so much pain and had to have morphine injections to ease the pain and try and let me have some sleep. I could'nt wash myself or feed myself and the nurses were having to do all these simple things for me. I was in quite a bad way and they told me that I was one of the worst cases they had seen for quite some time. The first 2 weeks in hospital were a nightmare with morphine injections and having an allergic reaction to Tramadol painkillers as well. I also had 3 methyl prednisilone infusions to control the inflammation, this had a knock on effect in as much as my liver function went through the roof and they had to suspend some of my drugs inc MTX. They decided to stop the Humira and start me on etanercept (enbrel) and bearing in mind I've only been on it for 6 weeks it has made so much difference. I am relatively pain free apart from a few niggles I can live with. I just wish that I had chosen etanercept in the beginning instead of humira but you just don't know. Another point worth mentioning is that Infliximab and Humira have the same chemical make up where as etanercept has a different chemical make up. This was confirmed by my consultant who told me that the failure rate for Humira was 1 in 7 and because i'd failed on that, that the failure rate if i'd been changed to infliximab would have been 1 in 3 so it was best to avoid that as well, that left only etanercept which has been a life saver. I'm on twice weekly injections at the moment.
Remember that Drugs work in different ways with different people but my advice for somebody faced with the decision of choice of anti-tnf would be to chose etanercept ahead of the others as it works wonders. I do so hope that it works for you. As regards a timescale for working I was told it should work well within 12 weeks. Don't be put off by my experience, however, if it hasn't worked within this time I'd go back to your doctor and see what the next step is. If you get a choice chose Enbrel its made so much difference to my life.
robert
>> If Humira works,when would I be able to tell some differance? Also,would >> it start to work slowly if it does work? I took Plaquenil for 6 [quoted text clipped - 20 lines] > > Smokie Darling (Annie) Harvey R. Stone - 12 Aug 2005 19:05 GMT Hi Robert,,,, I read your words and it makes me think of someone in the past in this newsgroup. Here name was Kitty and everything she tried made her body react to having it in her system. The only thing that really helped was prednisone. I read and watched her go from homebody raising her children with a loving husband to a person who had to use a wheelchair or be in bed all the time who had to have someone helping her to do most things. You must continue to try the new drugs that are available to you now. I do not think you gave Enbrel enough time but your doctor thought it was time to move on to one of the newer weapons to fight RA and its you and your doctor that are going to get control of what is taking place or not. Harv
> Hi Annie, > my name is Robert and I'm from Scotland my experience on [quoted text clipped - 80 lines] >> >> Smokie Darling (Annie) RoseB - 12 Aug 2005 21:02 GMT Thanks for sharing your experiences with Humira.
The fact is that RA is very variable, and what works well for some becomes "refractory" in others. I had the same experience with arava, where my RA became much worse; when I stopped the arava within a very short time I was better. My Rd said he had not seen or heard of anyone being refractory to arava, but that he had seen it with the annti0tnf drugs.
Remicade, although it initially worked well caused a reaction where regulary my feet and legs would swell, become bright red, and excruciatingly painful. My RD and other docs had never seen such a condition and the Rd likened it to Mediterranean fever.Because of that effect, I was also becoming "refractory" to the remicade.
I too am now on enbrel and am doing very well. I do not have morning stiffness or obvious inflammation. The pain that I do have is from previous damage.
I wish you continued good luck with enbrel. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Charrlygrl1 - 12 Aug 2005 23:30 GMT Hi Carol. I have never tried Humira, but am on Enbrel, along with 12.5 mgs of prednisone, MTX, azulfidine, ultram for pain, and one Soma per night, to sleep. I have been on Enbrel for one year and one month. For me, Enbrel hasn't been the huge help that it has for some. Though I guess I truly don't know, since I don't know where I would be without it. I also took Plaqenil for 4 months to no effect. I was on MTX about 2 yrs ago but then my Rd at the time took me off of it. Now, here I am on my third RD and he has me back on it again, slowly escalating the dosage. (He thinks my old RD took me off of it too soon, and didn't go up to a high enough dosage). Anyway, I do know that the Enbrel has helped me HUGELY with the fatigue, which for me was overwhelming. It took about a month for it to work on that facet of the disease. I hope that the Humira kicks in quickly for you, and would be interested to hear about your experience with it, Char
Carolj52@webtv.net - 13 Aug 2005 05:41 GMT Dear Char,Thank you for answering.I hope the humira kicks in soon too.I have alot of pain right now in both of my wrists, a few fingers,ankles and feet.I'm sure i'll be paying for this typing.Seems like alot of people are on Enbrel.If this doesn't work It will probably be next.What exactly is Azulfidine? I see alot of people are on that too.How long have you been on the prednisone? I want to get off of it so bad,been on it since Jan.I've gained about 15 lbs.I asked my dr.how long it would take to me get off of it and he said about 10 mos.Does that sound right to you? Guess I better close,almost midnight here,and it's been a long day for me.thanks again for answering. Carol
RoseB - 14 Aug 2005 19:40 GMT .What
>exactly is Azulfidine? You may also see it referred to as sulfasalazine. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Carolj52@webtv.net - 13 Aug 2005 05:15 GMT Hi Annie,Thank you for answering.What kind of problems did you have with the Humira? I had my 3rd shot tonight and sure hope it starts to work.My sed rate is 106,(it was 75 last mo.,and 61 when I started the Methotrexate in Jan.)and my RD is on vacation until the 23rd.So went to my primary Dr.yesterday and he said he could up my Pred.(I hate Pred also,who doesn't hey?) I told him I would rather have cortisone shots (my wrists are bad right now)he said he couldn't do that,he just does knees and shoulders,said the wrists are more complicating.So I call my orthoopedic doc and can't get an appt. till Oct.4th.So guess i'll have to wait and suffer it out till Sept.1st when I see my RD.Carol
Charrlygrl1 - 13 Aug 2005 14:51 GMT Carol, I have had three rounds now of cortisone shots in my wrists. For me, they have provided immense relief. I've also had two rounds in my left shoulder (one each thru the side and thru the top), as well as one in my left thumb joint. I asked my RD on my last visit for shots in my feet-I am having bad problems with my ankles as well as the balls and heels of both feet. He said that it wouldn't help me. I am still wondering why?? I will ask on my next visit. Azulfidine is a sulfa drug primarily used at first for ulcerative colitis. I was put on that after the Plaqenil and the MTX (the first time) failed. I've been on prednisone for a few months now...we have been trying to taper it down, but it hasn't been going that well. I am down to 12.5 mgs from 20mgs per day. As far as your wrists go, do you have any splints?? You can get relatively inexpensive ones at most drug stores, or you can have them made via prescription. I found, that with me, wearing them when I sleep helped tremendously. (I sort of curl up my wrists underneath my chin when I am sleeping). I also wore them at work because I type for most of the day. I hope that you can find some relief soon, Carol, Charlene
Carolj52@webtv.net - 14 Aug 2005 06:45 GMT Charlene,I'll check out the splints,right now I just wrap them and it seems to help somewhat.I know the shots would work,I've had 1 shot in my rt. ankle a couple years ago,as well as my right elbow,top and bottom,they helped.Then just this past Apr. had 1 in each of my knees.I have a torn meniscus in the left and a partial tear of the medial colateral ligament in the right.I was not a happy camper with that,they were huge,and I would get these horrible cramps from them in my calves.They are still a little swollen but alot better now,my ortho.dr.wanted to go in and clean them out if the shots didn't work,but he's satisfied with how the shots worked,so for now they're good enough for me.I also fractured my rt.bottom 5th metatarsal in my foot in may.,had to wear a Warrior boot for a couple mos.He said all is related to RA.I'm still having problems with my outer rt. ankle and he said if that isn't better in 1 mo.he would give me a shot in that.I just got a brace,so we'll see.I'm curious why your Dr.doesn't want to give you any in your feet.I don't know what's worse,feet,knees wrists etc.when they hurt,I guess what you have at the time seems like the worse.I also have like a lump on the ball of my left foot,can really feel it when I'm bare foot,but doesn't hurt yet(knock on wood).My RA started in my rt. ankle and achilles tendon.I have it everywhere now,but right now the worse are my wrists and my feet,and especially my right ankle.This is so much fun isn't it? I've had one terrible year,my 37 year old daughter passed away in Feb.from autoimmune hepatitis,liver failure,and 3 mos,to the day in May my mother unexpectedly passed away,I guess my having a sed rate of 106 is understandable,my RD said it was going to get worse and I guess she was right.Sorry for rambling on,I really don't talk much to anyone about my problems and I'm surprised at myself for doing so now.Hope you're DR.can help your feet,I know where you're coming from,it's no fun is it? Let me know what he says.Carol
Charrlygrl1 - 14 Aug 2005 18:10 GMT I'm wondering why he won't give me any shots in my ankles as well. After reading what you have gone through, I almost feel embarassed to be here. I'm so sorry about your daughter...I have a son and I can't imagine what it would be like o lose him-especially so young. Then to have your Mom pass, so soon, wow....I would give you a hug if I could. I lost my Dad two years ago, and that by itself, was very hard for me. You must be a very strong woman, to have dealt with all of that, on top of your health problems. Does it feel like you have a rock in the ball of your foot/feet? That's how mine feels. Couple that with heel pain, and I just can't find a comfortable way to walk. My Rd rec. arch supports, which I did get and they do help somewhat to take the pressure off of both the heels and the balls. All of my stuff started with my wrists. My lower back now is the worst culprit....that and my feet. Wouldn't you like one day like it used to be-with no pain at all. How nice would that be? Anyway, no problem about rambling on(not that I think you are). It's probably a good thing....with so many stressful things happening to you lately, it's probably good to get it out. I think we have all found out how stress can affect our physical condition. I think that talking bout things can help relieve that stress, what do you think? I don't seem to handle stress well, I kind of bottle things up until I blow up. It's very hard to change the way you have operated all of your life. I am learning to try to talk about things and bring them up before I blow up, though I am having sort of a hard time with it, lol. Anyway, I will be seeing my RD tomorrow and see how it goes. Have you felt the Humira kicking in yet, at all? Sending a prayer to you and for your daughter and Mom, Char
Carolj52@webtv.net - 15 Aug 2005 16:46 GMT Char,thank you for your kind words,you're very sweet,and sorry to hear that you lost your dad 2 year ago...I lost mine 6 years ago too.It's hard,but what you going to do,I have 2 other daughters and 1 son,2 live away and my youngest daughter lives near me,she's a nurse and I don't know what I would do without her,(and ofcourse my hubby who has been great too)she gets me going,and is my lifesaver,and I feel bad cause she is going threw alot right now herself,having to deal with me,and losing her big sister and Grandma. The lump under my foot doesn't feel like a rock,it kind of feels like I have extra padding in the sole of my shoe.I would think it's inflamation in the joints of my toes,I've never mentioned it to the Dr.I hope you have a good Dr.appt. today and they get to the bottom of it. Yeah,I sure would like things the way they used to be,I've had this about 41/2 years now and feels way longer.Can't remember what it feels like to feel good anymore.The Humira hasn't kicked in yet,I thought for a moment after I got the 3rd shot Fri.,that Sat.I didn't feel too bad,I didn't have that bad fatigue and sick feeling,then Sat. night I took the methotrexate,and Sun and today have that same feeling,I'm wondering if the methotrexate is doing something to me,I know it can't be doing anything for me because my sed rate has done nothing but go up since I've been on it.Well,when I see my RD on the 1st,we'll be talking about it for sure.I wonder how most people that are on the mtx.and bio.drugs take them? Together or a couple days apart? Well, you take care now and talk to you later.Carol
Smokie Darling (Annie) - 15 Aug 2005 00:58 GMT > Hi Annie,Thank you for answering.What kind of problems did you have with > the Humira? I had my 3rd shot tonight and sure hope it starts to work.My [quoted text clipped - 6 lines] > orthoopedic doc and can't get an appt. till Oct.4th.So guess i'll have > to wait and suffer it out till Sept.1st when I see my RD.Carol Hi Carol, sorry... I've been away for a bit, and missed seeing this. The reason that I did not write the side effects is because I'm one of those who "might" start having the effects after reading them (the mind is an amazing thing, too bad I can't make it do the reverse and make this stuff go away... whine, whine, whine).
I started with the butterfly rash on my face, that started with the first injection as I recall. Then I got injection site reactions. Neither of these was too troubling to me (had my RD been told by his staff, however, he said he would have taken me off of it, especially when it began progressing).
When the doctor began having me inject every week (as opposed to every other week). I started having problems with balance, hearing, speaking, vision, dexterity, etc... I stopped the Humira on my own, because I couldn't "find" my RD (another long story) to answer my questions, and I didn't like what was happening.
It took 4 months for injection sites to "go away". The neurologic things have been getting better (I stopped using Humira in June 2004). I still have a spot in my vision (left eye) that is blurred, and the opthamologist (sp?) says the structure is fine.
The RD is a bit concerned about that, but wants my records first.
Smokie Darling (Annie)
Carolj52@webtv.net - 15 Aug 2005 17:18 GMT Hi Annie,I guess you had alot of problems on the Humira,scary...In the pamplet it says to give the shots either the stomach or thighs,do you know if they could be given in the arms?I'm surprised I haven't heard from more on Humira.I know everyone is different,but I sure would like to know if when it does start to work (if it does)would it be real gradual,or would everything start to feel better at once? Would the fatigue first start to lessen? You know what I mean? You said you were on it for 6mos,is that like the max.of time if it isn't working that they will take you off? I know it says that you get the full benefit at 3mos.Carol
Smokie Darling (Annie) - 15 Aug 2005 17:51 GMT > Hi Annie,I guess you had alot of problems on the Humira,scary...In the > pamplet it says to give the shots either the stomach or thighs,do you [quoted text clipped - 6 lines] > they will take you off? I know it says that you get the full benefit at > 3mos.Carol I had heard that 3 months would be when I'd notice "improvement". I never did. I stopped the Humira on my own, since I couldn't locate my RD. It was an awful time, and when I found out that my PCP could not be trusted (he said my RD wasn't seeing patients only overseeing Remicade infusions, which was an outright lie).
However, another group I'm on has several people using Humira. Most say that the improvement is gradual, but noticeable. I think that the "average" has been in about 2 months where they started realizing that it was "better", and "this or that joint" doesn't hurt and it always had before.
Not sure about the fatigue though... I don't remember anyone mentioning it (since we all have it in varying degrees). Sorry I can't be more helpful.
Smokie Darling (Annie)
PS, I'm always (almost always) a slow respondent to any new drug regimen (with the notable exception of Enbrel).
Charrlygrl1 - 16 Aug 2005 16:56 GMT Carol, I had to let you know this, since I was talking about ankle injections earlier. I went to see the RD doctor yesterday, and my left ankle was so bad, he offered to inject it for me. It immediately got MUCH worse, and I mean much worse. Last night I could not climb up the stairs to my bedroom. I had to lay on the couch and I got no sleep whatsoever. Now I am here, trying to work. My ankle is so swollen, and my achilles tendon is more irritated than it has been, ever. I could find no way to lay that was comfortable for my foot. Have you ever had a problem like this? How bout you Annie? I may have to call the Rd back to see what the heck is going on. How are you doing, Carol? Char
Carolj52@webtv.net - 17 Aug 2005 05:23 GMT Char, Gee,I feel so bad for you.What part of the ankle did he inject? I know sometimes it's hard to explain just where.I had mine on the right ankle left side toward the top.Do you know what kind of steroid he used?I had the Medrol.another time when my achilles was bad she wouldn't give me one because she said she didn't want to take the chance of hitting the achilles.Did it hurt when he gave it? Did you walk on it very much after? by all means call him tomorrow if it doesn't let up.I sure hope it gets better. I was better yesterday than today.you know how it goes,you feel a little better one day and try to do things and you pay for it for who knows how long.I'll be thinking of you,let me know what happens. Carol
Gwen Love - 17 Aug 2005 19:34 GMT Char#2. I once had an injection in my hip for bursitis that for the next day was much, much worse. I sat in my chair and cried because it was torture to move. However, on the second day it was very much better and the shot worked for a good while after that. Hope your second day will be much better also. Gwen
> Carol, > I had to let you know this, since I was talking about ankle injections [quoted text clipped - 12 lines] > How are you doing, Carol? > Char Carolj52@webtv.net - 31 Aug 2005 19:36 GMT Char, How is your ankle? Carol
Carolj52@webtv.net - 16 Aug 2005 17:03 GMT Annie, Thank you for the info.I take it you don't see that Dr. anymore,that is so bad how he lied to you.Some Drs.and nurses just have no sympathy for someone in pain or stressed,I've had a few like that.My RD's nurse is a dandy,I almost went to another RD because of her.I had it out with her the last time I talked to her,and she was sooo nice after.I think she was afraid I was going to report her and I will the next time she gives me her attitude. Thanks again! Carol
Smokie Darling (Annie) - 16 Aug 2005 17:58 GMT > Annie, Thank > you for the info.I take it you don't see that Dr. anymore,that is so bad [quoted text clipped - 4 lines] > I was going to report her and I will the next time she gives me her > attitude. Thanks again! Carol Well, I'm having a bit of difficulty finding a new PCP, so technically he's still my doctor. I ranted in here a while ago about him telling me I wasn't in pain, I was just depressed. Grouse, grouse, don't get me started on *him* again (hee).
I think the new RD will be good for me, but dang am I having a nasty flare. Who knew that sulfazine worked? So far, his staff seems to be nice. Not one of the ones who schedules, she's too out there for me. Told me my name couldn't be what it is (legally - Beth), and then told me I lived in Castle Rock, and gave me another woman's address because we have the same last name (!). I told the RD about it, we'll have to see how that goes.
CHAR: I've had injections in joints, and never had your problem. I think you need to have it checked. Scary version of what might be wrong (it could be anything, so see your doctor): It's possible that you may have an infection in the joint and the steroid has exacerbated it. Please, go see your primary physician.
Smokie Darling (Annie)
Charrlygrl1 - 16 Aug 2005 21:50 GMT Thanks Annie, I am going to wait for one more day and see how it goes. On another board, I was told that rarely the steroid can crystallize and cause this sort of thing, but that it will usually go away within a few days. AND OMG, don't get me started on my last two RDs. Where is it that you get that superior attitude like: How dare you question me? How dare you waste my time asking about this and that. Your'e a big baby and need to get a handle on this disease. (That one really set me off). When I fired the last one, she and I had a huge argument in the bullpen area (the nurse's stations). We were going at it face to face, and man did it feel good. I cannot stand to be patronized. Is that what happened with your previous docs? Annie, thanks for the concern though, I am going to nurse it back home, and if it's not better tomorrow I WILL call the rheumy. Char
Smokie Darling (Annie) - 17 Aug 2005 00:58 GMT > Thanks Annie, > I am going to wait for one more day and see how it goes. On another [quoted text clipped - 11 lines] > and if it's not better tomorrow I WILL call the rheumy. > Char Hey Char,
My two RDs have closed their practices in the valley and moved on to greener pastures. First one went to Idaho and 4 RD practice, the second is going to Japan (the dog). Now I'm on RD #3, let's hope this works. I figure it's better if the doc has been around me for a length of time. The only drawback to #3 is that he only goes to Aspen one day a month, so if there is an "emergency" I won't be able to see him right away (though DH did say he'd drive me over the mountain to see a doc if necessary).
My PCP does not know (and probably doesn't care) that he is going to be fired. Once I realized that he will follow any plan written up by someone else, but won't start a plan... Well, you know how that is.
Had not heard of steroids crystallizing, but anything is possible. I told you mine was scary possibility (and only because it happened to me). I nearly died of my infection, because I trusted my PCP (hehehehe, and this too shall pass).
Smokie Darling (Annie)
Carolj52@webtv.net - 17 Aug 2005 06:17 GMT Annie, I know where you're coming from about trying to find a new PCP.I live in a small town and have to travel to all of mine,my endocrinologist (I have a multi nodule goiter and borderline hyperthyroid)is almost 4 hrs away.My RD is 2 hrs.,orthopedist is just under 2 hrs.and PCP just 45 mins. My PCP also told me once that he thought most of my pain was because of my anxiety and depression, and that i wasn't going to get better until I learned how to control it.Don't you wish they could have our pain just for a minute.OOOHH I don't want to get started either :-) Well,I sure hope your flare calms down some,I don't know where you live but where I do,we've had a hot, humid summer and that humidity sure acts things up for me,plus my allergies are starting to really act up,I ended up in the ER last Fall from a bad reaction to my allergy shots so had to quit them,that's another story. Carol
julianne.gentile@gmail.com - 19 Aug 2005 15:31 GMT > If Humira works,when would I be able to tell some differance? Also,would > it start to work slowly if it does work? I took Plaquenil for 6 [quoted text clipped - 3 lines] > Friday and can't tell any differance yet.Would appreciate any > comments.Thanks! Carol Hello, I am new to this group and I have been in treatment for my RA since 1996. I went directly from Remicade to Humira, so I never noticed the change right away. Remicade worked great for me, but I kept getting sick. I had shingles twice and was constantly sick.
I asked to try Humira, and I have been taking it for over a year. Since taking this drug, I have been able to go off all other meds. I only take advil or tylenol at bedtime for aches, but I get up in the morning with no pain or stiffness, and I rarely have bad days anymore.
I am so happy that Humira works for me because the Remicade was killing me financially, and the other drugs never worked for very long (I tried arava, plaquenil, methotrexate, celebrex, prednisone, and even minocycline.)
I hope you find something that works for you. It is so nice to get your mobility and life back.
Julianne
Harvey R. Stone - 19 Aug 2005 20:32 GMT Hi Julianne,,, Welcome to ASA and I had about the same experience with Remicade. I am glad that Humira works that well for you and Enbrel works the same way for me.
Harv
>> If Humira works,when would I be able to tell some differance? Also,would >> it start to work slowly if it does work? I took Plaquenil for 6 [quoted text clipped - 23 lines] > > Julianne Carolj52@webtv.net - 20 Aug 2005 06:32 GMT Hello Julianne, I'm so glad you responded to my post.Thank you.It gives me some encouragement as I am losing faith that anything will work.I am happy for you that you are doing so well,it must be such a great feeling to also to be off all the other meds.That would be my dream come true...Did you take the Methotrexate with the Remicade? The Mtx.doesn't do a thing for me,I don't understand why my RD.doesn't take me off it,same with the Prednisone, she says we'll see how the Humira goes and take it from there.I did get some relief from doxycycline twice,3 swollen top joints in my fingers went away the very next day i was on it,it also made my ankle and foot alot better.She said that doxycycline has an anti inflamatory affect to it.so told her I wanted to try the minocycline,but for some rason she didn't want to put me on it.I guess i'll have to listen and see what happens.Hope you continue to do well,and Welcome here,I've posted here a couple times in the past,but basicly,I'm new here too. Carol
Julianne - 20 Aug 2005 15:01 GMT Carol,
Mtx was the first drug I took when I was diagnosed. It made me horribly ill and I was unable to continue taking it. The doctors told me that most of these other treatments are designed to work with mtx, so I guess I am fortunate when anything works.
If you think your doctor is prescribing drugs that don't work for you, speak up and tell her how you feel and that your goal is to take as few drugs as possible. I always ask a lot of questions during my appointments. If I am going to pay all this money for an office visit, then I expect a consultation rather than just a quick look at my joints and a refill.
My RD says that most of her patients are doing well on Enbrel, (which I have never tried) and that few of her patients are on Humira.
I'm sorry that your doctor does not want to try it Minocycline, I had great results with it, but unfortunately the doctor that prescribed it for me moved away, and no doctor since has been willing to try it. None of them seem to believe in it. I have never taken doxycycline, did your RD prescribe that?
Something will work for you, just make sure your doctor is willing to try everything, and give each treatment the time required for it to work. A few years ago I needed a wheel chair at Disney World, but now I can walk, ride a bike, garden, bowl, etc. I still have trouble with things like bending, reaching, and crouching, but I attribute some of that to my reduced fitness level from being inactive for so long.
Julianne
Carolj52@webtv.net - 21 Aug 2005 00:44 GMT Julianne, What kind of sick did you get from the Mtx.? How long and what dose were you on? It makes me feel sick and depressed for a couple of days after I take it.I told her I wanted to go off and she said she would guarantee me that if I did,in about 2 mos. I would swell up like a balloon with inflamation.But before I started it, my sed rate was 61 and now it's 106,so tell me it's working. I'm also on 10mgs.of prednisone,and celebrex.I don't know,if I don't like what she does after this Humira,I just may have to look for another RD.I've been seeing her for 1 yr. now and nothing has improved,only have gotten worse.But, who knows,maybe I would be worse without all these meds.It's not that easy where I live,I have to travel so far away to see one.We only have 2 in about a 150 mile radius. No,she didn't prescribe the doxycycline,my PCP did,it was for a sore throat and sinus infection. I wonder why they don't want to prescribe the minocycline,I've read alot of success stories on people with RD getting better from it. Carol
Kelly - 21 Aug 2005 05:09 GMT Carol, It can take some time to sort out medications. It sounds like she is being pretty aggressive so that is good. Some people have to fight to be put on the more aggressive drugs. It could be you would be much worse without this regime. The minocycline can be a success for some people but it is one of the milder meds so if the humira and the mtx are not working for you along with 10 mg of prednisone I would suspect that the minocycline would not be a first choice. Keep working with her - 3 humira shots is really not a lot if your arthritis is being stubborn. It sometimes takes a bit longer for some meds to work on different people. Also take into consideration weight etc.(keeping in mind that I don't know you please - I am not making assumptions here in any way - just giving some possible reasons why it would work slower on some than others) Because humira is not weight adjusted (as is remicade) that can be a consideration for heavier people - I suspect that is the case with enbrel with me.
Do make sure you are doing the non med stuff as well to allow your body time to heal and your pain level to stay down. Icing, splinting, physio if you have access, some exercise as to the level of inflamation and pain (range of motion if lots of inflammation and pain, gentle isometrics building up in joints with no inflammation or little pain.) relaxation techniques, aids such as built up utensils, friction for grip, levers (door levers not knobs, levered taps not round ones), and raised seats such as cushions on chairs making it easier on the hips and knees getting out or raised toilet seats again making it easier on the hips and knees. There are other things but I can't think of them at the moment but these make life a bit easier.
Hang in there - most of us have been where you are and it is frustrating. I think all of us with stubborn cases will tell you it took more than a year to find the med and the combination of meds that worked (and it some cases unfortunately haven't yet worked) for us. Everyone seems to need things a little different or takes longer or shorter for things to work. There doesn't seem to be any quick or easy solution to this..... yet.
Kelly
Carolj52@webtv.net - 21 Aug 2005 20:12 GMT Kelly, Thanks for all the info.I do practice some of the things you mention.I had no idea that the weight could make a difference,I've gained 15lbs.since Jan.Because of the pred.I'll be doing my 4th shot this Fri.so maybe then,I sure hope so.I see my RD.on Sept.1st.maybe she will give me a shot in my wrists,they are bothering me alot right now and getting me down,yes,I'm very frustrated right now.I soak them in warm water and wrap them and it helps some.The ice works better on my ankle.I was in physical therapy but am taking some time off right now,just riding the stationary bike made my feet and ankles act up,can't win. Is the Enbrel working for you? Are you on MTX.too? My daughter had psoriatic arthritis,and the Enbrel worked great for her. Thanks again! Carol
Kelly - 21 Aug 2005 20:41 GMT The enbrel is working not too badly but not great either. Have acually had to go back up on the prednisone not down since on it but that plus the enbrel is keeping things at bay. I need my splints on badly these days but then lots is happening too. I can't take mtx (low wbc quickly on low dose.) I have a form of spondalaprothy but fall into the guidelines of RA so do qualify for treatment under that. I do understand - it does take time. The weight might not affect humira but the doctor I have definitely thinks that it has an effect on enbrel amounts. I do better on 3 a week but not a chance I can be paid for that. Instead every time I have an infection and have to go off for a bit I stockpile as if I were taking it and then do 3 a week for a bit. It does help. Hate the games.
Anyhow try some ice on those wrists and then some splints. I use ones from the medical supply stores that the occupational therapist recommended and couldn't do without them.
Kelly
Carolj52@webtv.net - 21 Aug 2005 21:36 GMT Kelly, Char mentioned the splints,but haven't had a chance to get them,she said they helped too.I have to go to the eye Dr.tomorrow and will check.Do you wear them all day or just at night?I iced my right one when this started(July 3rd.)because the top of my hand was red and pretty swollen and then I would wrap it in a wet very warm towel and it went down in a couple days.But this wrist thing just won't let up,and it's different because it's there just about all the time,just holding them still, feels like a bad achy toothache.it let's up about 4 hrs.after I take my meds.in the morning and for maybe about 4 hrs without the bad ache,or I have to take my Vicodin if they are still bad.,then you know how it hurts to turn the doorknob etc.,have that all the time.The typing bothers them too,but it makes me feel better to know I'm not alone with this.So many people don't understand what we're going through.I sure don't want any sympathy from anyone,but just a ''how are you'' would be nice to show they care..I have a couple friends that brag about how much work they've been doing in their yards,house etc.and how tired they are,and I'd say be happy you are able to do it and how i wish I could,and I don't even get a "sorry to hear that or how you doing?" I realize sometimes a person doesn't know unless they go through it themselves. Sorry to hear you have to up your Pred.Of all the meds I'm on,I worry the most about that,as everyone else I'm sure.How long have you had RA.? Carol
Julianne - 21 Aug 2005 15:47 GMT > Julianne, What > kind of sick did you get from the Mtx.? How long and what dose were you > on? It makes me feel sick and depressed for a couple of days after I > take it. Carol, it sounds like Kelly had lots of good advice for you. It does take time to sort it all out. The Mtx made me feel flulike every weekend. I don't recall the exact dosage as it has been several years. I took three pills on Friday and was sick all weekend. My reactions continued to worsen, until I was unable to take it at all. I was on it for almost a year.
Julianne
Easter - 21 Aug 2005 19:59 GMT Has anyone tried Folic Acid.....I have ''Gouty rheumatoid Arthritis.....nothing would stop the pain until a Dr gave me the folic acid.....
Carolj52@webtv.net - 21 Aug 2005 20:57 GMT I take only 1mg.per day,take it because of the methotrexate.Howmany mgs.do you take? Carol
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