I wanted to have some thoughts from you lovely people on here. I was diagnosed 3 years ago with RA and have been having Mxt 15mg weekly since. My RA has greatly improved since the early days but I still have a lot of flares and can't do many of the things I used to enjoy. A year ago my rheumatologist added daily Brufen Retard to help with the tendon pain mainly. This was good but now doesn't seem to make much real difference.
I have seen him 3 monthly since the start but now he says he considers me to be in remission and he has put me into the injection clinic only which means I can ring up and get one when I need it.
I have had small steroid injections in hip tendons which have been really good, but last time without discussing it with me he gave me these plus what I assume was a depot injection. I was going on holiday so maybe he felt I needed relief. Anyway it was amazing as I felt completely normal as if there was nothing wrong. It gradually lost effect and after 3 months I'm quite achy again.
My question is, do you think I should get these injections regularly as I assume other people at this injection clinic do, or are these just relieving the symptoms and not actually controlling the disease.
My rheumatologist doesn't really say much. I know RA is a difficult thing to deal with and everyone is different but I'm not sure I'm the best I can be as things are, and maybe I need an extra drug or at least a reassessment of the current treatment.
Your thoughts and experiences would help me decide what I'm going to do next.
Thankyou
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Downtime
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We can't give you medical advice, but can just tell you our own experiences in case that helps you decide things. I've had a number of steroid injections over the years and really appreciate them - both specific joint injections and the more general depomedrone. I view them as a special treat.
But personally I would have to have exhausted all other treatment options before I accepted having them as a regular part of my treatment. I know some people have no other choice but to take steroids long term, but I would prefer not to. Not just for possible side effects, but for me it's more that if I suddenly have an urgent need like a very serious infection then I want them to work to the max.
My current rheumy prefers to aim for getting her patients into a stable state, and doesn't like us to fluctuate with inflammation coming and going. Right now I'm starting to have to use anti-inflammatoires far more than previously, and she wants us to discuss alternatives at my next appointment in October. So although I am generally in remission she doesn't view it as stable - which I agree with.
Do you feel you are in remission or is this just your rheumy's view? As it doesn't sound like it to me. And my vote would be to push for a review of your medicines.
(The injection clinic at my hospital is mainly for people who aren't able to self inject MTX & other drugs)
Helix, thanks for your response. I agree and I suppose this was my gut feeling. I'll push for a review of my treatment. I dont want to be permanently reliant on the steroid injections however great they make me feel, and I'm fed up with taking anti inflammatories all the time as these have long term side effects too. Though I suppose all our drugs do, so it's a question of weighing up the benefit against the down side.What we all want is to live a reasonably normal life with as little pain as possible.
Thanks
Hey Damaged
I agree with nelixhelix
You don't sound in 'remission if you are getting great results from steroids.If it was me I would like to be in a place where I didn't need steroids.Any idea what your inflammatory markers are doing? Maybe your rheumy thinks your in remission because your blood tests are Ok?
Thanks Kiki, I'm séronégative ( sorry about the French words I don't know why it's doing that), and I have never had any raised markers so that makes it more difficult I suppose. Maybe it means I don't get as much erosion as séropositive people but it's never been explained to me.
It seems the erosion side of things determines whether you are in remission, however much pain you have!
I would say the basis of deciding if you are in remission or not would be how you feel and how your joints feel. My docs feel my joints and tell me if they are swollen or not, sometimes it's obvious. I often have pain but no swelling but they've decided I have OA now and damage from having my RA so long ( I wasn't well controlled in the beginning)
There are others reasons for pain and fatigue other than being in a flare. I notice more pain when I eat dairy, potatoes, rice. I try not to eat grains and feel better for it.
Hi Downtime. Sorry to hear you are still having a difficult time, but interested in your tendon pain as I'm experiencing the same. I've got seropositive RA and like you I'm on 15mg Methotrexate. That sounds really helped with joint pain and inflammation, but I still have bilateral problems with my achillies tendons, other tendons in my feet, plantar fasciitis and bursitis between the 3rd/4th toes joints.
My inflammatory markers are always low, ESR gets above normal range only during horrendous flares. So according to blood results my RA is fully controlled and I have no inflammation in my body despite the fact I can't stand on bare feet and I can't walk much!
Depending on who I see at Rheumatology one consultant says it's RA causing my tendon and feet problems, two other registrars I've seen more recently just look blankly at me like I'm mad and can't see anything wrong with my feet as I haven't got hot swollen joints. Last registrar told me it wasn't anything to do with RA, it was a mechanical problem.
I've been sent for ultrasound which has revealed thickened achillies tendons, plantar fascia and the bursitis, so at least there is now some proof something is wrong. Podiatry said I've got so many things now wrong, custom insoles would be too thick to get in any shoe. I am unable to stand in bare feet and cannot walk far without achillies tightening up. Can't get my heels to the floor when I get out of bed or up from a chair, so staggering around on tiptoes.
I've never heard of Brufen Retard, so will look that up. Have you had any other diagnostics for tendon problems that have helped your diagnosis?
I know my tendon problems are related to my RA (despite what some of the doctors say). My tendons are the first to flare, then followed by joints, and the last to get better. I think I might need to go up a dose on Methotrexate to see if this helps.
Hope you get some answers soon. It's so difficult with normal inflammatory markers, but as one consultant (good one!) said to me, just because it's not showing in your blood tests, it doesn't mean you're not suffering!
I'm so sorry you are having so many tendon problems, especially with your feet which lets face it we do need to get around. Thank goodness at last you're getting some sort acknowledgement that your symptoms are real and hopefully you can get these treated.
My tendon pain is mainly my hips and lumbar region. The rheumatologist said it is the most difficult to get control of and even when joints are improved with Mxt tendon pain can be a problem. That's why he prescribes the Brufen Retard which consists of 1600mg which releases slowly supposedly for 24hrs. I dont think it lasts that long , but you can take it at bedtime if you suffer in the night or in the morning depending on when your pain is worse.
As my rheumy's sidekick told me just because you have normal bloods it doesn't mean you don't have RA and you won't suffer just the same. Hey ho!
I don''t think you will be given Depomedrone injections on a regular basis automatically as part of planned treatments ....they do not control joint damage...the Methotrexate does that.
Like you I find they are amazing,y effective.....almost work before you leave the doctor's office & lasted for up to 12 weeks for me.
But my Rheumy said 3 per year (120mg) is the maximum I could have......I had them to tide me over when I failed on yet another Dmard.
After all steroids do have lasting side effects ....on bone density amongst other things. Prednisolone, although a different type of steroid also has other unwanted side effects.
After 18 years I'm now on Rituximab & haven't needed any steroid or any other supplement for over a year....but I'm not complacent...I was on Mtx for 7 years...then it went rogue on me.
The next time you speak to your Rheumy nurse why don't you ask her what you can actually be given at the injection clinic? Don't wait until you need pain relief. Other people at an injection clinic could be having all sorts of meds that need injecting ...you don't want to phone for a Depo injection only to be told you have to see the rheumatologist first.
I have them regularly I must admit. Although my rheumatologist's favourite quote is that 'you can't take a sledge hammer to crack a walnut'. Obviously! The thing is, when your pain is throughout your body, I feel it's a great help, but not a long-term solution. I only do it because i'm in-between treatments. Just have to be careful because they thin the bones over longer usage.
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