 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Arthritis / October 2005Update
Thanks to all who have responded so supportivly to my previous posts. I went for my first appointment on Tuesday to the Rheumatologist at the hospital. A very nice chap who confirmed that I have indeed got the disease, and have possibly had it for about 4 years. I discussed with him what my options were, and mentioned some of the treatments I have read about on here and some of the things that you advised. He was quite okay with me that I was getting information from the net (the junior doc that I spoke to first said to forget everything i had found out from the net and start again there), but she couldnt even answer some very basic questions. The main man said that there are basically two main forms of the disease, and that I had scored very high in my Rheumatiod blood count (score of 323 if that means anything to anyone) but the good news was that I had scored normal in the other blood count. When I pressed him on which of the 2 he would choose for himself if he had to, he said he would go for the other type, meaning that I have the more serious type. I am very confused about this as you can probably tell from the garbled way I am trying to explain it. I just couldnt take it all in at the time. Anyway, he said the government have a policy that all newcomers to RA must be tried on 2 different types of standard medication before getting to the good stuff, which costs around £10,00.00 per year per person. He said for the next 6 weeks I am to take Sulphasalazine, starting on 500mg a day rising to 2 grammes a day over a few months. Also to take Celecoxib Caps 100mg a day. Also to take Omeprazole 20mgs a day to protect my stomach lining. Also to take up to 8 paracetomol a day as needed. Any input from you on these drugs would be truly welcome. I must say, I have only been taking them for 2 days and feel so much better! Almost no aches at all! I dont know if its a fluke or not, would they work that fast? He also mentioned a new drug that ive seen mentioned here, Rituximab, but that it will not be licensed until next April. He mentioned that I may be able to get on a testing programme for the drug after Christmas. If youve read this far I could really use some opinions. Thanks Stuart Dear Stuart, Welcome (unfortunately) to this group! When I was first diagnosed, my rheumy recommended this group! That's how I found this place! Currently, I'm taking the sulphasalazine (maybe a different form?) It may help. Your rheumy will know how to protect you even with your regulations! (if not, get another!) Take care, Vickie B. > Dear Stuart, > [quoted text clipped - 7 lines] > > Vickie B. Thanks Vicky, do you take anything else with your sulphasalazine? Nice to meet you BTW! Stuart > Dear Stuart, > [quoted text clipped - 7 lines] > > Vickie B. Thanks Vicky, I have been made to feel very welcome by all. Stuart You are doing fine, Stuart. Your doctor sounds good too. I am thinking your world is going to continue to improve. Harv > Thanks to all who have responded so supportivly to my previous posts. > I went for my first appointment on Tuesday to the Rheumatologist at the [quoted text clipped - 30 lines] > Thanks > Stuart > You are doing fine, Stuart. Your doctor sounds good too. I am thinking > your world is going to continue to improve. > Harv Cheers Harv, I have improved in every department, but my wrists are worse, and they were the worse bit before the meds. Seems as though the cells that are attacking me have concentrated all their power on my wrists, the little bastards. It gets better as the day goes on though, Stuart >> Thanks to all who have responded so supportivly to my previous posts. >> I went for my first appointment on Tuesday to the Rheumatologist at the [quoted text clipped - 31 lines] >> Thanks >> Stuart >> You are doing fine, Stuart. Your doctor sounds good too. I am thinking >> your world is going to continue to improve. [quoted text clipped - 5 lines] > little bastards. It gets better as the day goes on though, > Stuart Hi Stuart,,,, Nearly all of us have had joints at one time or another that seem really bad for awhile. That is when my RD gives me a steroid shot in the joint or around the joint to put the fire out and for me,, it usually does just that. Harv > Thanks to all who have responded so supportivly to my previous posts. Oh by the way, I took Sulfasalizine for lots of years with Methx and prednisone. It kept me working and supporting a family. Harv >> Thanks to all who have responded so supportivly to my previous posts. > [quoted text clipped - 3 lines] >Why did you come off them if they worked so well? Does the immune system >become immune to them. Stuart >> Oh by the way, I took Sulfasalizine for lots of years with Methx and >> prednisone. It kept me working and supporting a family. >> Harv >>Why did you come off them if they worked so well? Does the immune system >>become immune to them. > Stuart I think you have hit on the answer to your question. For me,,,, it does change. We are very lucky today to have the choices we have and there are more in the pipe line. It is the reason we enjoy reading what MaryZ give us about what is new to help us but we have to be patient because it takes several years for new medicine to go from tests to product and side effects are the big reason for the delay. Harv >Thanks to all who have responded so supportivly to my previous posts. >I went for my first appointment on Tuesday to the Rheumatologist at the [quoted text clipped - 30 lines] >Thanks >Stuart Stuart, Welcome, sorry you have to have RA but hey, you are not alone. Firstly can I say [with the odd exception of posts from dr doc etc [an online rheumatologist] that no one here is either a doctor or rheumatologist, so whilst we offer advice and opinion, your junior doctor was right, as in "go with what they say to do for you" Having said that, Doctors should not be affraid of what we do, in general, do not accept one that dismisses the internet and calls you a cybercondriac! You have a right to find out about the condition that afflicts you and I'm glad to see your RD [rheumatologist] seemed to accept that. Working together as a team, patient and doctors is the best way forward. Without fully knowing the blood tests you had, it's hard to pass comment on them, but again be aware even your GP should beable to explain them to you if asked and importantly, tell you the normal range for each test. Once you know that, you know yourself, how far from the normal range or within it you are. Be aware that in the UK that range changes at each path lab [as the machines are calibrated] so maybe talk it over with your GP in slow time. There is also a newsgroup called uk.people.support.arthritis if you want to call by or have any UK type questions about RA. Your RD was right about the anti TNFs and NICE, you can read the full speal on the nice website, but if you just want a shortish history lesson try http://www.nicecampaign.org.uk/ to get the gist of what happened. >Without fully knowing the blood tests you had, it's hard to pass >comment on them, but again be aware even your GP should beable to [quoted text clipped - 3 lines] >that range changes at each path lab [as the machines are calibrated] >so maybe talk it over with your GP in slow time. Further to the above, I think one of the tests may have been the RF [rheumatoid Factor] test. In short you can have RA seropossitive or RA seronegative. You can have a possitive RF factor and not have RA and a negative RF factor and have RA! Confussed yet? Some people are RA seroneg and change to seroposs after a few short years and other stay seroneg all the time but still have RA. Some are seropos from the start. Having said all of that, the important thing is the RA diagnosis, which you have had, which means the docs know what it is and you get it treated. Hope that helps and doesn't confuse? again, talk though it which the RD at the next appointment, he/she will no doubt explain it in better english than I.....LOL Stuart, I'm glad that your doc got to the bottom of it and is being aggressive with treatment right off of the bat! I am on Enbrel (a tnf inhibitor), sulfasalazine, methotrexate and some others. It is not the law in the US to have to try two others before moving on to a tnf inhibitor, but most of the insurance companies that I know of do require that cheaper meds be tried first. I have been on 2000mgs of sulfasalazine per day for over a year now, and tolerate it quite well, it just wasn't enough relief for me by itself. (Let me say here, that I have ankylosing spondylitis, not RA, but it's very similiar in my case and the treatment is also very similiar). One thing about the sulfasalazine, for me, however, is a very high sensitivity to the sun. I get very dizzy, burn very easily and just a general malaise being in the sun for just a few minutes without a hat and sunblock. It is one of the warnings for that drug. Also, it sort of turns my urine a funny color, so don't be surprised if that happens to you! All in all it sounds like your doc is on track, and you are lucky there! I hope that the meds work and work quickly for you, Charlene > Stuart, > I'm glad that your doc got to the bottom of it and is being aggressive [quoted text clipped - 17 lines] > I hope that the meds work and work quickly for you, > Charlene Hi Charlene, ive just googled your ankylosing spondylitis, which I shouldnt have done because I now think I have that also. Only joking, but it does seem very similar to RA doesnt it? The nurse told me about the funny coloured urine, which to be honest, compared to the racking unbearable pain all over the body sort of pales in comparison doesnt it. Still, nice to be forewarned of these things I suppose. At least I do not have to leave history on my computer of googling 'bright orange urine'. Probably just get me to a fetish site anyway. Its nice to hear that you seem to have things under control, and the 2000mgs of sulfasalazine are not having any side effects (apart obviously from your hilarious urine!) CHEERS Stuart >>Without fully knowing the blood tests you had, it's hard to pass >>comment on them, but again be aware even your GP should beable to [quoted text clipped - 3 lines] >>that range changes at each path lab [as the machines are calibrated] >>so maybe talk it over with your GP in slow time. The range changes with each path lab? Surely not enough to maqke much difference?? > Further to the above, I think one of the tests may have been the RF > [rheumatoid Factor] test. Yes it was! I remember now, i was definatley high in the rheumatoid factor test and not the other one. In short you can have RA seropossitive or RA > seronegative. You can have a possitive RF factor and not have RA and a > negative RF factor and have RA! Confussed yet? Yes Some people are RA > seroneg and change to seroposs after a few short years and other stay > seroneg all the time but still have RA. Some are seropos from the > start. > Having said all of that, the important thing is the RA diagnosis, > which you have had, which means the docs know what it is and you get > it treated. Junior doc (after 45 minute chat and examination) said I may not have RA, consultant said after 20 seconds I have it. > Hope that helps and doesn't confuse? again, talk though it which the > RD at the next appointment, he/she will no doubt explain it in better > english than I.....LOL You have explained it very well, I am ususally quite bright but must admit i am struggling to understand much about RA, and the more I do find out the more I realise that there is nothing cut and dried about it, its all trial and error. It must be a good medical field to be in as a doctor, because its practically impossible to make a mistake! Just try a different drug! Cheers Stuart >>>that range changes at each path lab [as the machines are calibrated] >>>so maybe talk it over with your GP in slow time. > >The range changes with each path lab? Surely not enough to maqke much >difference?? If you live in the same area for a long time and don't intend to move, your bloods will be done by the same NHS hospital path lab, so all you need to know from your GP is the normal ranges for the test taken. If a couple of years down the line your job takes you to another county just check out the within norm ranges of your new locations path lab. Here's an example: These are hospital one's normal ranges:ESR [0-7] HB [11-15] WCC [4-11] PLAT [150 -400] AST [10-34] ALT [9-31] ALK P [50-279] CRP [1-10] These are hospital two's normal ranges: ESR [1-20] HB [13.2-17.2] WCC [3.6-11.5] PLAT [150-400] AST [UP TO 40] ALT [UP TO 40] ALKP [40 TO 100] CRP [0-8] Now if you just accept that ESR is a test used to show inflammation for now. If you got an ESR of 15 on your results when they came back, then if you'd been using hospital 1 you'd think "ah my drugs aren't quite working I need to be nearer 7 to be back to normal. Whereas if you've just moved and the results are from hospital 2, then 15 is within normal range so your DMARDs are working fine. Again, the best thing to do is talk it over with a doctor if unsure. All I'm really trying to avoid here is you reading someone else's results on the net [who may be in a different part of the UK or the world] and going "oh my god, my bloods were %whatever score% and he's in a bad way so will I become the same, when it may bear no relation! or even worst, he's fine so I must be, when your bloods read bad for your lab. Having said that, your Doctor will always see your blood results and should act accordingly, so don't worry. >> Further to the above, I think one of the tests may have been the RF >> [rheumatoid Factor] test. [quoted text clipped - 7 lines] > >Yes I think a poll was done on RA sero neg/pos here some years back, can't remember the exact results, but maybe 25% seroneg 75% sero pos, although I stand to be corrected, maybe we should do another? >Some people are RA >> seroneg and change to seroposs after a few short years and other stay [quoted text clipped - 6 lines] >Junior doc (after 45 minute chat and examination) said I may not have RA, >consultant said after 20 seconds I have it. Junior is still learning/consultant rheumatologist, should have something like 15+ years experience behind him/her. >> Hope that helps and doesn't confuse? again, talk though it which the >> RD at the next appointment, he/she will no doubt explain it in better [quoted text clipped - 5 lines] >and error. It must be a good medical field to be in as a doctor, because >its practically impossible to make a mistake! Just try a different drug! Thanks, the one thing to remember, from "our [the diagnosed patients]" point of view, is that we are all different, and RA effects us all in different ways, thus what may work for one, may not for another. Thus tell us about it here on the web, we all want to know and discuss it but don't insist we all try it [not that you have or would] or try it yourself if it's someone elses experience and then be disappointed if it doesn't work. An example of what I've tried to say, in a clumsy way is "If you stop eating tomatoes and you have less pain, great don't eat tomatoes, they make you flare" but don't recommend I do it cause I could stop tomatoes for a month and still be flaring! if you see what I mean? As for the different drugs, I assume your RD has explained DMARDS and NSAIDS to you? Well even with them things change as the years pass, things progress and regress! An example is NSAIDS [read up on COX1&2 and COX2 inhibitors] for years people with RA took COX1&2 NSAIDS to help, the down side being the GI problems related to the use of them. Then COX2 NSAIDS where developed, clinically tried and used to assist people with GI probs from NSAID use, now you'd say "That's progression" then more recently, some COX2 NSAIDS have be withdrawn because of the Heart attack problems [Vioxx been the most reported in the press] so we regress again. The ANTI TNFs have been a godsend to many and who knows what's round the corner, they may eventually get a DMARD that makes them look tame. The doctors, do sometimes make mistakes, they are human just like us, but that's sometimes what's so good about this group and others like it, you relate your experiences and if others have had similar ones and spot a wrong turn, they will quickly point you in the right direction and sometimes the Doctors even agree! Did you know you can get online leaflets free at ARC web site? http://www.arc.org.uk/about_arth/booklets/6033/6033.htm Good luck with your research into RA, I'm glad your RD doesn't mind that you do that, sounds like he's a good RD. All for now >If you live in the same area for a long time and don't intend to move, >your bloods will be done by the same NHS hospital path lab, so all you [quoted text clipped - 29 lines] >your lab. Having said that, your Doctor will always see your blood >results and should act accordingly, so don't worry. Just a quick foot note to this, don't worry much if your ESRs/CRPs are high initially [Mine were 70+ to start with] until your sulfasalazine or other dmard has had time to work. DMARDS are all different but ones like sulfasalazine and MTX take a number of weeks to build up in the body and work in general. Stuart wrote <snip>. " > Welcome, sorry you have to have RA but hey, you are not alone. > [quoted text clipped - 24 lines] > lesson try http://www.nicecampaign.org.uk/ to get the gist of what > happened. That is really interesting, I will definately be taking this up with the RD next time. This is just the sort of thing i am looking for. Thanks, Stuart |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.