Hi all, at last I have plucked up courage to post on here..... Sorry it is a long one.Back in Aug '22 I suddenly started getting weak hands, swollen ankles and other achey symptoms. After several months and my first visit to Rheumatology I was told I had a migratory type of inflammatory arthritis. By this time the inflammation was appearing at different times in many different places - primarily hands, wrists, forearms, top and bottom of feet, ankles, knees, legs. I had done my own research (of course!) and found this thing called Palindromic arthritis which sounded the closest to what I'd got ie affected these different places in joints but also tendons etc, seemed to not cause lasting damage when the inflammation subsided, but was excruciatingly painful for days at a time and extremely debilitating. Mentally it was very difficult to cope with as I didn't know what was happening, I couldn't do a lot of the normal things I loved or even just needed to do, so my life changed completely.
After being prescribed the usual NSAIDs I was given hydroxychloroquine which I didn't take after reading all the side effects - I was hoping that whatever I had would subside with time. However, this hasn't happened so I finally gave in and started the HCQ at 200mg daily dose about 3 months ago. I can't see that this has made any real difference and feel that I need to really get a grip on this now and get some of my life back. I was also given Prednisolone to take for flares but again am worried about starting taking this so haven't taken any. Also, as my symptoms never go away, just vary in intensity I really don't know when I would take them.
I am inspired but confused by all the information I read about on here but would welcome any advice, encouragement or anything else. Thank you.
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Take the tablets, is my advice yes they have side effects, in some people but if the side effects you suffer are awful then you stop taking them. The side effects aren't usually worse than suffering and you need to stop the damage RA is doing to your body.No one wants to be on any of these medications but there isn't a magic wand to make you better and your being prescribed them by professionals who genuinely feel that they will help you.
Sorry if this sounds harsh but all these conditions are crap and these are currently the best options you have to feel better. I'd be dead if if I hadn't been taking steroids the past six years and I have tried most of the other drugs too. I've only had a side effect with one drug out of the more than ten I've tried so please don't let a concern about something that might not happen stop you taking medication that will help.
Hi I’m sorry that you’re going through this at the moment. I was initially diagnosed with palindromic arthritis which eventually developed into sero positive rheumatoid arthritis. I was on HCQ for about 10 years, plus sulphasalazine and anti inflammatories for during flares. Luckily I didn’t have any side effects with those. When the flares started to get more progressive I was given a number of meds including methotrexate and all had a negative effect so had to be stopped. I’m currently on Benepali which has been a game changer for me. I could then stop the HCQ but carried on with the sulphasalazine. The best advice I can give is to follow the advice your rheumatologist gives you, we are all different and the disease progression varies for everyone. Just stay with it and eventually you’ll settle down with the right medication for you. Speak to the rheumatology nurses about your concerns. Look after yourself and take care.
I agree with wilbertjellyfish. Drs should have explained to you that the meds you describe are dealing with long term rather than immediate targeted issues. Responding to underlying inflammatory issues. Hope you can get things under control
My introduction to RA was exactly the same as yours. It was diagnosed as palindromic RA. Hydroxy 200g one day 400g next took 4-5months to fully kick in but it works. I take Zentiva brand and have no side effects. If you do not take the meds it will not get better. With only very occasional flares, my life 3 years later is virtually normal. Trust the professionals and avoid Google maybe?
Thank you Turnaround. That has made me definitely want to persist with the Hydroxy and be more brave. I wonder whether you have used steroid tablets as well?
Hydroxychloroquine definitely takes a while to kick in. I think hydroxychloroquine dosage is based on your weight and to be honest you want to be taking the lowest dose you need. I started taking 200 hydroxychloroquine back in 2014, to begin with I was prescribed a three month reducing course of prednisone first then when that helped I started the hydroxy.
Unfortunately the pred caused me to develop steroid induced T2 diabetes, fortunately I was taking part in a medical trial at the time and it showed up right away. I started on a low carb diet and got back to normal fairly quickly.
If you haven’t already been told - be sure to keep a check on your eyes, have an eye test and get baseline OCT scan as soon as you can - hydroxychloroquine can affect your eyes although it hasn’t affected mine - I have an annual eye test and OCT and I have downloaded an Amsler Chart and check my own eyes.
Yes I had steroid injection when first month of hydroxy was prescribed. It did help with flares, which as you say, are random and excruciating. Do try perseverance with the meds. Its seems daunting at the outset but looking back the patience was worth it for return to normality. This help group has been a marvellous place to gain experience from others on the same journey as you and I. Please update how you get on. Please care.
Ah, I have been given Prednisolone tablets starting with 20mg reducing by 5mg each week. I will definitely update on here after a few weeks.Yes, lovely to have feedback and share similar worries/experiences. Thank you.
I felt like Superwoman when I was taking the prednisolone - didn’t feel quite so good when I found that I had developed steroid induced T2 diabetes though.
Hi, I was diagnosed with palindromic rheumatism in 2020. I was prescribed hydroxychloroquine and it dld work for me, just occasional flares but in between I was virtually normal. Since last June I have had pain pretty much every day, jumping from joint to joint, the worse being when it is in my knees, I struggle walking and the stairs are awful. I had three steroid injections, the first two didn't work but the third did, for about 6 weeks I was great. I know what you mean about trying meds as the side effects are a bit scary but I think it's a case of trial and error. My consultant put me on sulfasalazine alongside the hydroxycloroquine and the sulfasalazine gave me horrible side effects so I came off them. Palindromic rheumatism is terrible as like you say you can wake up with pain in your knees, but by the end of the day its in your hands, feet, elbows etc. I think you have to give the meds a try, and if you're not suited the consultant should try you on something else. I have an appointment this week to see what next step is.
Been on hydroxy for 10 years no side effects, take twice a day.The longer you put off taking what was prescribed the worse your symptoms will get.Sounds like your having a flare and need the steriods to me.
Did your rheumatology dept give you a nurse specialist number to ring? They would explain and reassure you!
I must confess I have never heard of Palindromic Arthritis. I was diagnosed with Seropositive Rheumatoid Arthritis in every joint back in 2005. I was put on methotrexate and when it was really bad prednisolone steroids. I stood it for 18 months but I just knew I was feeling worse everyday. I could never quite get my head around the fact that all RA meds were to suppress the immune system, when to me I felt that the immune system was the actual problem and needed helping not to suppressing? I tried suphasalazine as a last resort but that also seemed to make the condition worse. So I spent many years simply taking just the usual natural meds and Glucosamine, cod liver oil etc. Occasionally when the pain was too bad I would take paracetamol or ibuprofen. My consultant discharged me as I was not taking the big meds and I refused the biological self-injection type. Although I still got pain I definitely felt better inside. My GP put me on diclofenic, which I only took when necessary. As years passed I also developed Osteoarthritis and changed to occasional Naproxen. I am 75 now.
Two years ago I hade a heart attack and began to worry about the side effects of Naproxen as the hospital told me to stop taking them. So I returned to my RA consultant and asked him if I can change Naproxen to Hydroxychloroquine. I had been researching this medication online and read that it has far less side effects for anyone with heart issues. The consultant also gave me prednisolone but I refused to take them. Luckily after taking Hydroxychloroquine 2 x 200mg daily I have managed to get by fairly well. There have been no side effects at all and I began feeling better after around 6 weeks. I might still have the odd paracetamol but all in all much less of a risk than anything I have taken in the past. I now notice the consultant has changed my condition to Sero-negative RA. Not quite sure what significance this maybe? I wish you the best of luck but I would say yes it is well worth persevering with Hydroxychloroquine - Happy New Year
id take the hydroxy I was given them by rheumatology for palindromic rheumatism but next rheumy took them away and said fibro and have suffered for years since with awful pain and inflammation and no help when hydroxy at least helped some, my hands especially, since I have just progressed with awful health so dont be wary until reason to be, at least try please and see, we are all different but they may just give you great relief, I hope . best wishes
I have argued and possibly yes but I am undiagnosed with many furthered symptoms and a failing nhs so am yet to be seen. had high dose steroids which helped some symptoms too but not all, on a 5 year +journey with a dismal health trust 🤷♀️ numerous symptoms which do not even fit fibro 😡🤷♀️ but I would take again yes for the benefit
Hi so sorry you are having such a rotten time. Just wanted to say that Prednisolone has helped me so much over the years when I couldn't take much else. I have now been on 5mg for many years and although I would advocate it to anybody without good medical advice it has been a lifesaver for me with little side effects. Hope you soon get a diagnoses and good luck!
Thank you diana16 for the positive vibes.You get to the stage where you know you can't just continue just doing what you are doing, esp as certain meds can take so long to work (if they are going to!) so good to hear that Prednisolone has been such a help to you. I must bite the bullet and help myself.
Lots of great advice here, so this will be quick lol
1, RA is a nasty disease, so take the meds to stop further damage first of all.
2. Sid effects happen. Divide them into tolerable and not. Different for most of us
3. Long-term use of drugs with damaging side effects is the biggest issue, but use whatever you can to get RA under control. Damage from RA is mostly more of a problem.
There you go. Over 35 years of RA and 85% of all treatments distilled into a few words 😂😂 Don't suffer in silence and put up with pain, you don't get more treatment if they don't know how you are doing.
I was diagnosed with Palindromic arthritis way back in the 1990’s & you are right…the pain is excruciating……therefore taking the medication you are prescribed is the way to go…..sadly with very few exceptions…drugs are the answer.
After two years my PA morphed in to full blown sero+RA … with the usual ups & downs on the drugs you read about here .
I know the drugs sound scary…& without the background ,training, knowledge & experience that our rheumatologists have…it can be tempting not to take them…but you need the protection as well as the relief they provide..
I think that is the one thing most of us eventually learn….listening to our rheumy & accepting that medication will for most of us bring long term relief….so the sooner your prescribed drugs are taken the better.
I know that’s not what you want to hear…& only a very few do get that blessed relief with the first drugs they take….so like the rest of us…. soldier on & I hope you soon find a medication that will help you.
you must take steroids until you get it under control then you can take it from there, I have been on them 8 yrs , however , when you in pain you will take anything ⭐️
I hope you having regular bone scans….the sooner you can wean off steroids the better.
I developed osteoporosis in my late 70’s without taking regular steroids…& believe me…the longer you can remain off steroids the better.
Getting old is bad enough pain wise..adding OP is not the way to go…yes I do know there are some unlucky who do have to rely on them…but don’t voluntarily make it your choice,
Yes your so right- I already fractured m tv back lifting a dish out if oven , can’t do anything for it now , plus I have osteoarthritis, need a knee op, lots of other things going on , it’s like 2 steps forward and 5 back 🙄
note my diagnosis is Adult Onset Stills disease (aged 17 in 1979) which for me manifests as rheumatoid disease. I took steroids for 4.5 years without issue and eventually walked without support again. Now 61 pain from joint damage is my normal but if I hadn’t taken the steroids who knows where I’d be now.
As an aside I’m currently having tests for reactive arthritis after a year of malaise .
I too was diagnosed with Palindromic arthritis and sent directly to the RA department where I was told I have RA and was started on hydroxy. It wasn't any help for the first 6 months. I complained that it wasn't working and I felt completely disabled with both knees swollen all the time it was difficult to take one step up to get in my front door. He started me on methotrexate (mtx) in addition to hydroxy. Which still didn't help. I changed RA drs cuz I thought the 1st seemed cold and uncaring. I liked the 2nd Ra Dr and she started off draining the fluid off my swollen knee, giving me a steroid shot in the knee with the fluid. I woke up the next day with no pain, no inflammation and feeling normal. I called the DR and asked if the shot caused the inflammation to disappear and she said yes. I continued to take the hydroxy and mtx and I felt like the previous months I had taken them they couldn't help because I was so inflamed, but once the swelling and joint pain was gone the pills could finally work. But she said I had a very aggressive form of ra and needed to start the biologic Humira.
For 10 yrs everything was pretty normal but this yr it seemed like nothing is working so I'm working on finding the next step. Good information in this group.
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