Palindromic rheumatism

Lisamac

Just saying Hello

I have palindromic Rheumatism and have recently started taking methotrexate. Had a few side effect but think I'm going to be ok with it.

anneb82

Hello @Lisamac

Welcome to the online community and thank you for joining us. I hope that you will find the community a very welcoming and safe space to share more about yourself and your arthritis journey.

So you have Palindromic Rheumatism and have recently started to take Methotrexate. You've had a few side effects to start with but you feel like you are getting on well with it.

I'm glad you are getting on ok with the new medication and it is great that you haven't had any nasty side effects. Have you found that it has made a difference yet or is it still too early to say? I will attach some information below for you to have a look at when you have a moment. I hope that it is of interest to you and its new information.

Please do let us know how you are getting on and please do feel free to share a little bit more about yourself when you feel comfortable to do so. We are a friendly bunch and are always looking to make new friends. If that's something you are interested in doing, than maybe take a look at Val's Café where lots of people chat daily.

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Take care

Anne (Moderator)

frogmorton

Hi @Lisamac Palindromic Rheumatism was one of the first things they suspected with me too.

There are a few people here who have PA I hope someone will come along soon, but I remember reading this story a while ago (took some finding again!!)

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/?_ga=2.101859078.605710476.1680411652-1855638952.1594146193#palindromic-rheumatism_zoe%E2%80%99s-story

It's not the same as Anne posted for you yesterday it's by a person called Zoe who has the condition.

Anyway pain is pain we all understand it and loads of us also take MTX! You are no longer alone.

Take care

Toni x

Lisamac

Hi Toni, Hi Anne

I'm new to this site so I don't know if I'm replying to you both but here goes. Thank you so much for your kind words and the links. To answer your question Anne, I'm only on my third dose of Methotrexate so early days. I will let you know when it starts to work.

I was diagnosed with PR 23 years ago. I was 39 and I wasn't given any treatment, the Rheumatologist said to me 'there are treatments but if I give it to you now I won't have anything to give you further down the road when it gets worse'. The thought that it was going to get worse filled me with dread because it hurt so much.

Back then nobody knew what PR was, even the doctors had to look it up. I have it mostly in my knees and hands. After about five years the Rheumatologist agreed to give me steroid injections in my knees but only one knee at a time. Well that was really helpful but at least I had some relief for a short time. A few years later I was given meloxicam which did help a little with the pain.

I can relate to Zoe's story with her son. My son thought it was quite amusing that I had to shuffle up and down stairs on my bum. I now live in a bungalow and have done for about 15 years.

My journey has been long and very tough at times, probably the worst being when I had to give up work which meant giving up my restaurant.

If I look back over the past 23 years, most of things that has happened to me health wise, was unnecessary and was 80% lack of knowledge by doctors and 20% lack knowledge by myself. Had I been given the right treatment earlier, my life would have been so much different.

Sorry I do rabbit on but I could probably write a book.

I mostly joined this site in the hope that I could help others not to go through what I've been through. PR does not just affect the joints, it is so much more than just a joint problem.

If I could give one piece of advise it would be, DO NOT LET THE DOCTORS FOB YOU OFF. One of my biggest mistakes was thinking that the doctors knew best. Mostly they do but when you have an illness that is unpredictable or rare you need a specialist. Even specialists don't know everything about every illness.

Thank you

Take care

Lisa

frogmorton

Hi Lisa you are replying to both of us and anyone else who looks in on the site.😊

These days they ought to be saying the earlier they start treatment the better!

Ah well I'm glad you have started now and hope it helps. It is possible though that after 23 years some joint damage may already have happened.

I have to agree with you too Drs do not always know what's best and sometimes timely intervention is what is needed. We also need to be assertive as I have sadly learnt over the years.

Lovely to meet you please do read some of the other posts and chip in everyone appreciates support here.

Take care

Toni x

Lisamac

Hi Toni

Thank you and nice to meet you too.

Sadly you are quite right about damage. I also have osteoarthritis and I was told a few years ago that I need new knees but told I was too young as the new knees would only last 10-15 years.

I was also told that PR doesn't cause any damage to the joints like RA does. The jury is still out on that one.

Yes we need to be more assertive, which is so difficult when you are in pain and you are not sure what is happening.

I did have a look at some posts, It seems that a lot of people have more than one type of arthritis and/or other illnesses. I thought I was just odd having two forms of arthritis and many odd ailments.

I'm off to look at other posts.

Take care

Lisa

Lisamac

Hi folks

I was told yesterday to stop taking Methotrexate because of the side effects and now I have to wait another month to see the rheumatologist.

Trying to be positive, it just means I've found another thing that doesn't work, not all is lost, I've been given some prednisolone in the meantime, which I know does work.

Lisa

ljt79

Hi Lisa,

I hope the steroids get you through while you wait for the next option!

My rheumatology team are reluctant to diagnose PR, but have recently given me a diagnosis of Migratory Episodic Inflammatory Arthritis (which sounds like more or less the same thing to me, but I guess there must be a nuanced difference..?). Because of my super-high anti-cpp numbers and family history they are assuming I'm going to develop RA at some point in the next couple of years, so I'm on watch and wait until then.

I've been prescribed naproxen, which slightly takes the edge off, but didn't stop the pain/discomfort from disrupting my sleep last night, so I'm shattered today. The GP also doesn't want me taking much of the naproxen so won't put it on a repeat prescription (I have a call in a few weeks to talk about this...!).

I've only been dealing with it all for 6 months, so am still getting used to having to be patient and try and accept each step in diagnosis/treatment will take ages. It sounds like you're quite good at rolling with that after all this time.

I hope the next treatment option works much better for you. Do keep posting - it makes a difference hearing from people dealing with similar things.

Lisa x

Goldfinch

Hi,

I was diagnosed with probable PR in November after flare ups started about 6 months earlier and GP did blood tests. Consultant recommended 200mg hydroxychloroquine to try and calm it down (I guess) and reduce future chance of joint damage. Started taking it in January as flare-ups were almost constant, though mostly in tendons. @ljt79 is this an option that your consultant has offered? I have a friend who also has PR and is on same. I had many sleepless nights (shoulder flare-up, plus wrists) and found naproxen helped after a couple of days. My GP did put on repeat, although with a stomach protector.

Last blood tests showed numbers in normal range (my reading of them, on the Patients Know Best website that my hospital uses, so I could be wrong) though hands constantly stiff so speaking to nurse tomorrow to see whether I need to increase meds or take steroids. No flare-ups anywhere else (though wrists are clicky). Only side-effect is mild tinnitus.

I felt really cross that nurse kept telling me about all these meds that were available if this or that didn’t work - but I had to say that these are not without side-effects. Found it quite overwhelming, felt quite impersonal, like I’m just some kind of piece of data in an experiment, although I know it wasn’t intended to be. Hoping I don’t need to increase meds, though hoping more that this hand stiffness isn’t a progression or joint damage. Good luck with your meds @Lisamac . Mostly I just get on with it, but sometimes I use all the swear words I can muster to express my feelings about this!

Lisamac

Hi all

I've been on prednisolone almost a week now and the swelling in my hands is reducing, my knee usually take about two weeks to see any improvement.

Hi Lisa, PR is a rare form of arthritis so they don't like to diagnose it because they know that as soon as a patient leaves, they will look it up, they also know that there has been very little research into it, so the patient is going to come back and ask questions that they don't know the answer to.

RA is more common and there has been lots of research done. The main difference is PR is not supposed to cause joint damage but RA will. I say not supposed to because I believe it does but takes much longer to cause damage. There is also a protein, can't remember the name but people with RA have this protein but people with PR don't.

As for Migratory Episodic Inflammatory Arthritis, that's what I call the doctors pacifying the patient, they give you a title for your condition because they know everyone wants to know what wrong with them.

Watch and wait, is all well and good for them but they are not the ones suffering, I can't believe they didn't put you on a DMARD.

Please, please do not be patient and put up with things, because they will let you put up with it until you cannot cope any longer, it's better for them and cheaper for the NHS, it's not that they don't care because they do, but they have to justify what they do. Don't tell your GP how you are because their hands are tied on what they can give you. Tell the rheumatologist it's keeping you up at night and you are exhausted and it's interfering with your daily life. If you haven't got an appointment with your rheumatologist, send them an email. Sorry if I'm being dramatic but I've suffered for many years mostly because I just put up with it. Oops, do tell your GP because they need to know but also tell your rheumatologist.

Hi Goldfinch I know just what you mean about it feeling impersonal, it's like they are dictating a letter to be typed up later. I want to shout at them and say, I am a person, so speak to me like a person and not a computer. In fact speak to me like you are explaining to a child because I have no idea what you are talking about and I cannot take in all this information in two minutes.

I understand that they do their job day in and day out and they have lots of people to care for, they understand arthritis, the medication and the side effects but we don't.

I see you are both on naproxen, I'm pleased it's helping a little. I was prescribed naproxen and it did take the edge off, I took it for two months but had to stop because of the side effects. That's my trouble, my body thinks everything I take is the enemy, I try to tell it, this will make you better but it doesn't listen. I was given tramadol once and had a seizure, that was scary. Years ago I was given some antidepressants. can't remember the name now, but my 9 year old son said to me, 'Please stop taking those pills because you are talking funny', I couldn't speak properly, I got all my words jumbled up.

Good luck to you both, be polite but firm and clear with your doctors

Take care

Lisa

ljt79

I was thinking today that I probably need to get back in touch. I went in already knowing about PR (I took the Versus Arthritis booklet with me) and also explaining that my great Aunty started off with PR symptoms before progressing to RA.

The registrar I saw couldn't see visible inflammation (I only had sore toes and Achilles that day) and although I had photos from flares that wasn't enough. Interestingly, based on my blood test (anti-ccp 363) I think they thought it was going to be a straightforward RA diagnosis, so not having active swelling threw them and my hand and feet x-rays were clear.

I tried not taking any naproxen at all for a couple of days, but yesterday I couldn't walk bare foot and even in my specially bought supportive slippers was hobbling. Took 500mg this morning and by lunch it was mild discomfort and stiffness, so I don't really want to follow the GP's instructions to take it sparingly.

Luckily the shoulder and hand flare that caused my exhaustion when I posted before was definitely dulled by the naproxen and stopped at two locations, totalling 3 days. Until 6 weeks ago, I was on a non-stop rotation. At that point it seemed to settle in the toes/MCP joints of my left foot and my right Achilles and those are now sore daily, with occasional soreness in my rights toes and minor flares elsewhere.

Lisa, I'm glad the steroids are starting to help and keeping everything crossed your next med change makes a big difference! Thanks for the advice - greatly appreciated!

Lx

ljt79

I know this thread has been dormant for a while, but I thought I'd pop in with an update:

My left foot has been consistently problematic since the start of Feb (I had my initial appointment on 20th). Because I had other health things get exciting around then, I put off ringing the helpline until Monday this week. Really, I was ringing to see if I could see a podiatrist (wasn't feeling hopeful about much else), but they gave me a call back with a nurse specialist instead (yesterday) and she got me in to see a doctor today! After months of delay with liver nonsense investigations (looks like it will be fine) the turnaround time was a pleasant surprise. An even more pleasant surprise was that the Dr. I saw today immediately confirmed the PR diagnosis, rather than the previous wooly one, and not only did I get a steroid injection in my foot then and there, but I also came away with a couple of boxes of Hydroxychloroquine and a follow-up appointment in 12 weeks! It's weird to be excited about something inherently pretty negative, but as I can't change the fact I have an autoimmune condition, this sort of progress feels great.

I'm well aware that this is just the beginning, there's no magic bullet and I will have to wait and see if the meds help, but for today, I'm feeling a lot better about it all.

I hope you're all doing well!

Lx

IbB511001

Hi all

So helpful to read the experiences of others. I felt like a lost

soul until diagnosis earlier this week. My diagnosis follows nine months of

difficulty following a bout of COVID. It hit my chest about two weeks after the

COVIS passed. I thought I was having a heart attack, but it turned out it was the

soft tissue and cartilage in my chest. I have had breathing difficulties ever

since with flare-ups in my chest on a regular basis. like others I have

'swarming' in my wrists, knees and ankles and shoulders. This is more common in

places where I have an old injury. I am only just starting to understand the

impact of the condition and appreciate any good signposting and advice.

I am 64 and worked full time but the condition has now reduced this to three days and a change of role.

Mentally I am adjusting to the fact that this is something I

need to learn to live with. It is not the case that I was ill and now I am

better. That is a hard adjustment to make as I have never really had any serious

illness. The biggest issue for me is the impact on my breathing as this limits

my ability at all different levels.

 

Keep safe and well.

Ian 

ljt79

@IbB511001

Hi Ian,

I'm glad you've been given a diagnosis. Have you been offered medication? Hopefully, there will be something that can help a bit!

Mine kicked in after covid as well and made my asthma worse, but it did finally start improving and I'm less reliant on my inhaler now (just over 2 years post-covid). I don't know if that's a time thing or because I've been on hydroxychloroquine for just over a year, but either way I hope your breathing improves in the coming months!

Lisa