Hi Jon…sorry you have had to jointhe RA club…the club nobody wants to join!
I too started out with Palindromic in 1997 ….I was in my 50’s & now I’m doing fine .It sounds as if you haven’t seen Rheumatologist yet ? As you are only on steroids and naproxen?
Have you got an appointment to see a Rheumatologist? If not, I should try to chase up your GP to get a referral so that you can start on some disease, modifying antirheumatic drugs (DMards) They are the magic bullets to start settling things down. The first one you are prescribed won’t necessarily be your magic bullet, but these days finding a drug that suits you can be reasonably quick….but don’t lose heart if it takes a while.
Of course, it wasn’t all smooth sailing, back in the 1990’s,but we are now very fortunate that there are so many new RA drugs already here, and more coming onto the market …..so that most of us do find “our drug” and are able to lead a comfortable life.
Of course, there are some who don’t find “their” drug quickly, and nature being what it is - people who are not doing well are far more likely to write about it than those of us who are doing well, so don’t let it depress you when you read about those who who are still searching for a suitable drug.
Hope you get that rheumy appointment pretty soon….chase it up.
I also started with the palindromic rheumatism at age 62 and then diagnosed with ra right after that. Was started with methotrexate + hydroxychloroquine which did nothing for about 6 months and then I changed ra doctors + she said she was going to be more aggressive. Started me on some prednisone which took all the inflammation down that I'd been suffering with for 6 months. Barely able to walk and then also added humira. 2019 I stopped the methotrexate and hydroxy cuz they didn't seem to be working well anymore and the ra doctor said just stay on the humira but then this last year seemed like the humira wasn't doing much anymore and I started having the palindromic flares again which I had not had for 10 years. Enbrel a month ago. Still waking up with swollen hands and feet. I also have bursitis flaring below my knees at the top of my shins most days and there's nothing for that except over the counter pain meds.
Hi and thank you for taking the time to reply, sorry to hear about the pain you are experiencing.
my PR gave me some painful episodes and I have been hospitalised 3 times in last 2 years I get in the normal joints most of time hands wrists fingers shoulders and legs (does yours travel round the body from feet up the leg into shoulder and then down the opposite side?) it is bizarre how I know where it will be next.
The worst is in my pelvic bone and this is when I have been hospitalised unbearable pain with the slightest movement. Since starting the hydroxychloriquine I have not had a really bad episode so hopefully this will continue.
yes the flares traveled around from the top of my hands to my shoulders. My ankles and one time it even landed in my jaw. So for about a day and a half I couldn't open or close my mouth. It is very strange the way it moves around. I think the hydroxychloroquine helped. That was the first med they put me on and then I didn't have any more flares like that until this last January. But I've been off the hydroxy for a little over a year and a half. I think it didn't seem to be doing anything anymore cuz I started having flares again. The hydroxy worked for about 7 years And then I started having flares again. And then this last January I had some PR flares which made me think the humira wasn't working anymore. And my ra doctor s don't seem have an answer for the PR flares. I don't think they know what causes them and why they happen?
Thank you so much for the reply and help, I have seen a consultant and he has prescribed the items I am taking. I have had a few issues with him as he is not very descriptive with his prescriptions and my local pharmacist refused to issue the medication last month. I have asked for an alternative DR for my next visit.
Did the pharmacist explain why you couldn’t get your prescription? Rule No 1…is always ask WHY? Until you know the reason you will just go round in circles. If your scrip was for any sort of Dmard…one very common reason is the lack of blood test results.
Don’t just wait for your consultant or rheumy nurse to rush to sort things…these days it’s DIY that gets results.
Hi Jon. Very sensible reply from Aged Crone - can’t add to it apart from to say you can always contact the team at NRAS who are the fount of all knowledge and will give you unbiased, up to date advice and help verbally and with written info.
Involve family and friends -you will need to let them know what you’ve got and the ramifications of it - and you’ll need help on the days you get clobbered by the disease /fatigue before it becomes tamed and you’re on the right medication.
These days it is really a matter of finding the right medication and tweaking it with the help of a rheumatology team. It’s all exhausting and a bit frightening to start with but there’s loads of support and help on this site so ask away and we all do our best to answer. Stay positive and all the best.
I can’t add much to AC’s reply but welcome Jon, well done on your first post I hope you find it useful being here. Feel free to ask anything you like, there’s no silly questions, there’s lots of support and advice here and although we can’t answer medical questions there’s a wealth of knowledge about living with RA from people here. If you need someone to chat to the NRAS helpline will be on the other end of the phone 😊
I also began this journey with palindromic rheum, and progressed to full-blown RA (started in my 60th year). As someone has already noted, a rheumatologist is needed. I was unable to tolerate DMARDS and they didn’t alleviate my disease, but I am now on a biologic and doing well, tho not fully in remission. It takes time (and can be very painful) but I think most people do find a drug that works and we do mostly get our lives back I found it helped to track my own wellness and illness patterns-having some data helped me to make some sense of it all. Best of luck to you. Better days will surely come.
Sure. Blood test results, of course. But more useful to me-I have a good Garmin sport watch. It’s not a medical device and I don’t count on it to be precise, but it tracks trends well. From watching the data from it, I learned that my average resting heart rate begins to rise 7-10 days before a flare-up. I have no idea if this is only me or more generally true, but I have been able to use this to take extra care that helps me to minimize the flares (in my case, extra ibuprofen, stress management, and hot showers seem to calm things somewhat, especially in the building-up stages). I also track blood pressure carefully but it isn’t as good a predictor as av resting heart rate in my case.
Hi Jon. Like you I was initially diagnosed with palindromic rheumatism 5-6 years ago when I started getting 1-2 week very painful flare ups in random joints that would then just disappear. After only 6 months I was then re diagnosed as having RA when I had a full body flare up that decided to stick around for more than 6 months. Early treatment like you’re having really helped reduce the pain and inflammation but if I’m honest it took probably 12 months to get it under control and a further 6 months to be inflammation free. BUT having found the right treatment combination for me I’ve had no flare ups or inflammation for 3 years now. I have to acknowledge that I get tired/fatigued more easily and I have very stiff joints first thing in a morning … but that’s it 😃 🤞🤞
There is every chance you will reach this point too and luckily for us the choice of drugs available to treat RA is growing all the time … with a consultants help you just need to find the right one for you. Have patience and good luck on your journey.
Thank you and glad to here you are hopefully in control and not suffereing too much, the morning pain for me is the worst at the moment but I feel more positive after reading everyones replies
I too started with Pallendromic Rheumatism which turned into Rheomatoid. I would agree that you need to see a rheumatologist now, before it develops.good luck
I have been treated for RA now for over 20 years . Interestingly my doctor (local GP) had suggested I may have palindromic arthritis. When I mentioned this at a consultation with rheumatologist nurse .. she just said well we are treating you for RA… end of story. One interesting comment you make is about severe pain in your hands. I have that too, The pain, generally at night, is so intense, it’s like a driving pulsing burning pain which builds to a crescendo that I can’t keep still, I have to walk around constantly swinging my arms to get the slightest bit of relief . Just can’t stop walking Pain killers do nothing to relieve the pain. Phoned 111 for additional pain relief advice and was told to go to A &E .. my experience there is another story … I walked all night in A&E unable to sit down with swelling in hands wrist and lower arm.. Now on steroids again , whilst I haven’t had a serious flareup for the last 2 weeks still having small flareups which flit around my body.. Is this your experience too? Going for another medication review in April, Been on third combination medication, been on Leflunomide and hydroxychloroquine since September but it doesn't seem to be working very well… Don’t know what I will be offered next
So sorry to hear about your issues. Yes my flare ups are bizzare, if they start in my left foot it will be there for between 1hr and 2 days then it will move to my left knee with the same duration times then my left shoulder or jaw then across to my right side and then either down to the same joints or it stops and comes back a week or so later. In the night if my hands are bad I run hot water over them which helps with the pain as I don't like taking too many painkillers. before I was prescribed the naproxen and the prednisolone. I was taking boxes and boxes of ibuprofen and paracetamol
Hope they find something that helps you soon my friend
Hi Jon sorry to hear you are going through so much pain.Alot of what you say I can relate too. Keeping a positive veiw towards this makes a world of difference.
Have you had blood tests done, you are not vitamin D deficient drinking enough water and checked to see if certain foods make it worse?
Following Patient access newsletter that's run by the nhs I started taking creatine monohydrate.
Within a month I had the use back in my left hand and the pain had reduced.
I also take Maltodextrin wonderful for easing damaged nerves.
I've how a damaged spine so mobility is poor at best but I found that taking a protein shake thiat i made up that has a mixture of different stuff in it ive reduced the pain got movement back and very rarely get the night cramps now.
Do your own research and if in dought talk to a doctor / chemist or dietician thats upto date with modern health techniques.
Alot of the problems people suffer from is due to poor quality food that is contaminated or just lacking in protein.
It's not just one person that says this, professionals experts in their field. It is possible that with certain medications or conditions that there are certain things you need to avoid. This is true with proscribed medication as well, and why it is so important to do your own research and talk to more than one medical professional if in dought
Some people are allergic to certain nuts for example so we have to know what we can or can not eat or drink
Also the quantity one should take depends on the individual. Eat to many cream cakes you put weight on.
If taking creatine do not exceed the recommended dose also drink at least 2ltrs of water.
Listen to your body do research and if you are taking medication check with a chemist / doctor.
It is worth noting that it is important to research any medication prescribed or other wise you take. I know from my mother's condition that doctors don't always pick up on conflicts between medications and conditions
Thanks Chris, I would like to start a diary and mostmoses has mentioned detailing other data so is something I will do. sorry to hear of your issues and thank you so much for sharing
Welcome (in a strange way) hope you know what I mean! Have you not been given any RA drugs? An NSAID won't stop any damage. Have you seen a rheumatologist? If not you need to push for it. Sorry you've had to join the club. Hope your journey is as smooth as it can be.
Hi Jon, Sorry you’ve had to join the select RA club. I assume your diagnosis has been confirmed by a Rheumatology consultant, but if not you need to see one quickly to start getting proper treatment for RA with DMARDS to slow down deterioration of your joints.
It’s obvious that naproxen and steroids whilst helping somewhat with the pain are not controlling the RA. The continuing pain in your hands and ankles and the general morning stiffness and fatigue are all signs of uncontrolled RA.
I hope you can get treated quickly and start to feel better.
Thank you for taking the time to reply and for the sound advice. I have learnt more from all of the kind replies than I did with 2 visits to see the consultant. Will be following up tomorrow to get an alternative dr
Hi Jon, as I’m sure you’ve realised from the replies, this is a friendly and informative place to help with any concerns or questions you may have about your condition.
Just as JulesCurrie said, I am being treated for RA despite it saying on all letters seronegative palindromic inflammatory arthritis. When I asked my consultant about it he said it is a form of RA. All I know is that taking my Hydroxychloroquine and Sulphasalazine helps so I would think they have you on the meds you’re taking at the moment to settle things down while they check your blood work for the best medication to put you on.
As always, speak to your Rheumatology team and of course we are all here for support too. Hope you feel much better soon.
Thank you and Hi, I am overwhelmed by the kindness and support and feel in a better place already. I have had 2 blood tests a month apart and have another booked for another month, your explanation does seem to make sense and I will make some enquiries tomorrow to get some more info.
I started to suffer badly in my late 50's, after many rheumy appointments and getting frustrated with the lack of progress I did my own research and discovered my JIA at 12, hayfvere in my 20's (I love trees but they hate me :)), psoriasis in my 30's all leading on to the bursitis, tendonitis, RA and OA and then Fibromyalgia symptoms that lead to one conclusion Enthesitis. Unfortunately no medical notes had been made about my JIA so no consultant knew about it, but the last one accepted my investigations and finally treatment, a DNA test proved the HLA-B27 gene as responsible. I am on a 6 monthly steroid injection for a prolapsed disk at S5, I am also on Pregabalin for the FM, generalised painkillers (cocodamol and paracetamol), 450mg naproxen for the inflammation which gets me through the night although it can take anything from 30 minutes to 3 hours before I can move.
I always say allow at least a month before you can see if any medication change may work, I actually managed to go from 600mg to 450mg by reducing the morning dose as there are side effects with naproxen that are longer term but the alternative is pain and being bed ridden which I won't accept as viable living.
Good luck with your rheumetology as there may be more going on and in my case, Enthesitis is not well studied in the UK, we have only 2 consultants both paediatricians in the UK, the US have far more information available on the medical university sites.
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