Palandromic Rheumatism and RA. Treatment offered was methotrexate?

[jomojo]

Hi, after being diagnosed with Palandromic Rheumatism and CCP ppositive antibodies I was given the option take methotrexate. I asked if I could I go away and think about it. I would really appreciate anyones personal experiences and advice.

[Damaged]

Hello Joni hi and welcome . I am sure you will read many things both good and bad about Methotrexate. My best advice is find a Rheumatologist you trust and try whatever they recommend. With autoimmune conditions it is truly an individual thing. What works for you may not work for someone else. The goal is to minimize the damage done while the inflammation is active. Choosing to not treat is equivalent in risk to stage IV Lymphoma. There can be side effects , as with most drugs but the potential benefits can far outway risks. It is a personal journey and only you can judge what works best for you. Be patient as it can take time. There are many questions and adjustments to make so do not rush into anything. Do keep in mind that the best chance at remission is early and sometimes aggressive treatment. Hang in there and keep breathing. 🧘‍♀️

[jomojo in reply to Damaged]

Thank you Damage. It all sounds quite scary. I was diagnosed PR back in 2009 and put on hydroxycloriquin. After 3 years I was told that it was probably reactive arthritis and discharged. I havent had a flare, until 3 months ago. Wow! It's daily pain and exhausting. There is still no joint damage on my x-rays but I am now RA positive as well as CCP positive. So after my own internet reseach I've found out a lot about what it is and how it can be severe. I wondered though that if it had gone away for 6 years with no treatment. Whats to say that will not happen again and Ive had toxic medication. Although to carry on in this pain is unimaginable too.

[Damaged in reply to jomojo]

I know what you mean. I have a very long list of drug allergies and drug reactions on top of the serious nature of these drugs. I had my genetics done so that I know in advance, how I am likely to respond.

It does not tell you what will work. It is a very personal journey for each of us. It is not a one size fits all. It is a very serious drug but remember you are treating a very serious condition. The one thing we do know is there is no known cure. The goal is or should always be prevention. Why wait for damage ? It is not reversible.

I sound like I am advocating drugs but that is not my goal. I am advocating specialized or a targeted treatment approach. But your journey is yours alone.

[jomojo in reply to Damaged]

Your absolutely right. I have an appointment on the 6th June when I return from my holiday in Cyprus. My rheumatologist gave the impression that there was no reason to believe that there is any damage or likely to be urgently. She gave me a Methotrexate leaflet and said think about it and we will see you in a month. My own research has led me to realise that it is more serious than that, That and the increasing pain too.

[Damaged in reply to jomojo]

The CCP is a good indicator but it truly can be a wait and see situation. I was diagnosed in 2015 , only after refusing to leave GP without a lab requisition. He wanted to send me off with Fibromyalgia and more drugs. I could no longer walk at this point so I lost it.

I said if he could not provide physical evidence of Fibro then he needed to keep looking. My husband drove me so I had a witness. I said that I would pay for testing if needed but was not leaving without it. The results came back with insane values and it has been a medical oldest ever since. I was incapacitated for 18 months so was unable to save either business. Oh well , more time for research now lol 😂

I was pretty intense initially since I was certain I would not survive oh oh still here lol

There will be many ups and downs and many stressors ahead so deal breath and tackle things one issue at a time.

I have been a financial planner for twenty years so focused on making financial adjustments to accommodate early retirement. It is a unique experience butthere are solutions so hang in there. Many find that it is very manageable with little impact on their lives so do not anticipate the worst.

[oldtimer]

Looking at methotrexate is pretty scary but for rheumatologists it is the most effective treatment, so that's what they usually recommend.

Just because it comes and goes doesn't mean that it can't damage your joints. Disease Modifying Anti-Arthritis Drugs (DMARDs) help to prevent that damage. Have a look at the treatments page on the NRAS website.

There are other DMARDs which might be helpful in preventing damage and relieving the pain and swelling. You might consider whether they might be more acceptable to you as a starter to see if they control the disease?

[charisma]

Hi jo, MTX is the standard treatment for such Rheumatoid diseases.

I have been on it and hydroxychloroquine for two years and 4 months. It does take three months to get the full benefit so the sooner treatment is begun, the better for prevention of damage.

I hope you find your own path ahead soon.

[caggy]

Hi ya, I was diagnosed with RA initially and recommended MTX which i did go away and think about; the nurse was quite adamant that i would have damage if I didn't start treatment straight away, but I proved her wrong after a 3 month wait BUT just a few months later I was in agony and had to start treatment. That meant I was a little while getting to grips with how much I could take and what doze suited me. Now after 7 years I only suffer every now and then but its quite manageable, I take 25mg injection MTX and pop a few paracetamol and ibrufen every now and then. So I think I'm quite lucky, over time I was told that I probably had palindromic arthritis as it moved about from joint to joint.

I agree with the other comments, get started on treatment as soon as possible as they know their business.

Best of luck

Carol

[Magymay]

Hi jo I'm on Methotrexate injections for PSA,20mgs weekly ,started on tablets and it was horrendous,nausea and running to bathroom all the time ,mouth ulcers and scalp rash,generally feeling like death .Slightly better on jags but day or two after really bad then j pick up but still taking pain relief so when I complain they say keep at it .Everyone's different with it so give it a go and if it's too much just ask to try another med.Good luck with it 😉

[jomojo in reply to Magymay]

Hello Magymay.

I do hope you eventually settle on the methotrexate jabs and they work to dampen down this horrid disease. I'm sure that no-one knows how they will react until it they try it. Does it ever sink in I still think Im adjusting to the diagnosis.

[Magymay]

Well it's a shock when your as young as yourself ,I'm 53 but have had pain since teens but just suffered it and was too busy bringing kids up and working to take notice. Docs just fobbed me off with ibuprofen .Escalated at 50and with persistent badgering docs they referred to rheumatologist.It will either kill me or cure me but have to try something .I do hope it works for you ,you have your whole life in front of you ,god my son is 29,you need to get it under control and life lie to the full ,before it catches up with you ,good luck 😉

[jomojo in reply to Magymay]

I am nearly 53 too, young at heart though😃. I agree you do need to live life to the full. Thats many years to have suffered. I am grateful that I have had good health up until this. Since your teens undiagnosed? I can imagine how hard it would be bringing up a family with the pain and fatigue of RA. I am quite upset at the thought of no sunbathing and limited alcohol. Two of my favourite things. But then if it saves my joints and health then thats more important.

[JanetMaryBishop]

I use 15mg Methotrexate injections weekly along with Hydroxychloroquine and Sulphasalazine. The Sulphasalazine gives me symptoms that are due to the changes that the MTX makes to for instance the linings of your mouth and sinuses. For that reason we could be considering a change for that part of the treatment. The MTX itself is for me very effective and relatively side effect-free but everyone is different. I was diagnosed in the early stages and during a flare-up so feel fortunate and now in week 12 of treatment there is already a big improvement. It has given me my life back. I was in danger if having to retire early but now that thought has gone. So I wouldn’t worry about the MTX. You will have the support of a team, hopefully, depending on where you are, and I have found them invaluable, and with me when there is total apathy from my GP practice. If it doesn’t work for you there are many options but please give it a go. They may start you on MTX tablets first as it is cheaper. Didn’t work with me and after 6 weeks we changed to Meto-Ject and my life was restored to as close to normality. Best of luck.

[jomojo in reply to JanetMaryBishop]

Thanks Janet. The Rheumatologist team seam to be really good and so friendly so I feel that they will know whats best. Im glad that your seeing improvements now and long may that continue. X

[Nuttyshirlz]

Hi

I was also given that same booklet to read. I’m also 53. Also suffer for years but just put it down to over working and running around after my lads. I’ve Psa and fibo. I’ve being on methotrexate 13 months at start had few problems but once over that 12 week period I was fine. 4 months after I was also given sulfasalazine. My nurse is taking about adding something else. I also did a lot of reading up. I wasn’t on this site at time.

Good luck 🙂

[Libluce8]

My husband was diagnosed with palandromic rheumatism in 2000 but was never offered any meds, in fact some doctors had never heard of it. In 2009 he started with pain in both shoulders that never responded to Naproxen so given by now he was also CCP positive he was referred on to a rheumatologist he wasn’t interested in his shoulder pain but was concerned about a couple of his fingers and knuckles. He was given hydroxychoriquin but ended up with mouth ulcers and blistered skin, came off it given sulphazalasine but reacted badly so was told best option Methotrexate which has never stopped the pain or the disease progressing. Nearly ten years on his shoulders are still an issue - the couple of fingers and knuckles plus his wrists bother him occasionally and he’s still having to take Naproxen to manage the pain. He has brain fog, gave up work five years ago and hasn’t worked for over two years - he has also just been diagnosed with early onset mild Neuro cognitive disorder. He’s tried coming off methotrexate many times but gets itching skin, red sores and the itching becomes debilitating - only methotrexate (or a low dose steroid which his doctor won’t give for longer than a month) stops the itching. This is his story this is how his life is affected, from my perspective I’ve lost my husband and if we’d known in 2009 what we know now no way would he have started taking Methotrexate- for others it maybe a miracle drug for my husband it’s been a nightmare.

[jomojo]

Gulp! I'm so sorry that you have both had to suffer so long? You really have had a battle on your hands. My Rheumy didn't put much faith in CCP testing as it was fairly new back in 2008. She said my RF was negative and my suggestion of palandromic symptoms was probably right. My GP was useless back then so I moved GP. Only when my left leg swelled twice its size and I couldn't move my shoulder or hands I went to A+E I was taken seriously. For once there was visible swelling at an appointment. It's my first flare in 8 years so I've been lucky. I had hydroxycloriquin and naproxen codene and amytryptaline for two years. Rheumatologist said as there was no sign of damage after 2 years she thought it was reactive arthritis. And discharged back to my GP. So I stopped hydroxycloriquin and I've been good until this year. Now RF positive too. So I guess it's difficult and unpredictable condition to diagnose and treat. Good luck to you both I hope your husband finds the help he needs.