RA's a mystery

Hi as I have said before I have had RA for some 17 years and only take Salzapine and dipophenic (not sure how you spell them) and take pain killers. I have two new hips and a right shoulder. Up to a year a go I was going to the gym and walking with no sticks for short distance now I am in great pain in the knees and can't walk any distance with one stick and have had to get a scooter to get about. You all seem to be getting alsorts of med I have not been given. I have had injections in my knees. I am going to see my RA man in two weeks time is there anything I should ask him. I am going to tell him how I feel that things are getting worse. Life is great apart from RA I try not to let it get me down but sometimes is it all worth it.

5 Replies

oldestnewest
  • Hi Beep,

    I'm not sure when your rheumatologist last gave you a thorough RA MOT but it sounds like this might be an ideal opportunity!

    Some people respond very well on only the minimum of RA meds and Sulphasalasine (salazopyrin) is a well regarded disease modifying drug (ie it works on slowing down the progression of the disease). Diclofenac is an anti-inflammatory (works just on the symptoms of the disease). In combination and with pain killers chucked into the mix you seem to have coped well thus far! I am sure the emphasis must be on prescribing treatment at the least toxic level possible to achieve a desired result and this seems to have worked for you.

    However, with long term disease such as ours there is always the chance of joint damage and knee injections suggest to me that there is RA activity in that area. (Been there myself!)

    I think it would be worth asking if he can assess your overall disease activity and whether an alternative drug may be more suitable at this stage. Also perhaps further investigation of your knees, although this will ultimately mean a referral to orthopaedics. Certainly jot down a few notes for yourself about how you are feeling generally, pain levels, details of any inflamed joints, lack of mobility etc. All these things help when your sat there desperately trying to remember exactly what it was you wanted to ask!

    I wish you well at your appointment,

    Lyn x

  • Hi Beep, some people can cope on just the minimum of meds like Lyn said as everyone is different. You seem to be suffering a lot at the moment though and you shouldn't have too not these days anyway.

    Keep telling your consultant exactly how you feel as your drugs may need a review, after all he only knows what you tell him the blood results don't always give a true picture, not in my experience anyway. So if your bloods look ok he will think your ok!!

    RA is so cruel to us, we can feel so well one day and the next like were back to square one but please don't lose heart and don't suffer in silence either!!

    I've had endless op's and injections, I also think you may need to see a orthopaedic surgeon as I did they can be extremely helpful.

    Take care Beep

    mand xx

  • Awwwww Beep You have been really long suffering. Takes the gangs advice ( only if you want) and get a full on MOT.

    Let us know how you get on and lots of luck !!!!!

    fiona x

  • Hi Beep

    Like the others have said I think you should go to your next appointment with lots of questions (write them down! I write down stuff all the time now a trick I learned from others on here, else you forget).

    Your blog raised a question for me about RA and OA which I think I might blog about separately. Did you or do you have OA in other joints anyway?

    Good Luck and take care Julie x

  • Hi Beep

    Bless you , try to do what the others have said and write down little notes, your body may have just got used to the drugs, or time for a boost. watch yourself on your scooter, have you seen on the television there's a scooter display team doing syncranised movements, maybe you could get a group together.

    Take care Beep and keep us posted

    Tricia x

You may also like...