Pred & Methotrexate, yes or know and the need when dealing with other auto immune conditions as well as PMR

[Gaz227]

Hi All , my Rheumy has tried for years to get me on methotrexate and I have refused time and time again, although I can’t get below 3 mg without upsetting the apple cart as they say . My dilemma now is I am having a different set of symptoms to standard PMR, it looks like I have Sjögren’s syndrome and I am also having tests for Sappho and RA . The thing is if it turns out to be RA or the other immune conditions wouldn’t methotrexate be the sensible option to stop the disease progressing rather than just mask the symptoms . I know pmrpro has said before if your below 5mg of pred the side effects and damage to your body is minimal on pred , but if it’s a progressive disease that’s could potentially completely destroy my joints and the glands that supply my eye tears and saliva surely methotrexate is the way forward . Decisions decisions , your thoughts peps 😩

[SheffieldJane]

I think you are right, an RA diagnosis makes a stronger case for Methotrexate for the reasons you have given. Personally, I would have been content to stay on 3 mgs forever. For me GCA joined the party, so it was not to be.

[SnazzyD]

I think PMRPro means when Methotrexate is introduced for just PMR when things are controlled on a low dose that seems to be a sticking point. Why introduce it? However, if you are getting other conditions such as RA which can cause damage progressively, the goal posts have rather changed.

[Gaz227 in reply to SnazzyD]

I have 8 weeks before I see the Rheumy again and get the verdict on my new diagnosis . A chap mentioned in an article I read that there are 3 things that need to be Spot on to overcome a lot of these Rheumatic immune diseases , 1 Nutrition 2 Exercise and 3 lifestyle. So I have nothing to lose I am adopting a Vegan diet , a small amount of cardio, yoga, strength training and meditation every day, ( not over doing it) lots of rest and sleep and see what happens . I’m 5 days in and I have to say I do feel a lot less ache in both muscles and joints plus I have more energy and less fatigue through the day . Anyway at least when I see the Rheumy I can say I Gave it my best Shot before I go on methotrexate . 🤞

[SnazzyD in reply to Gaz227]

Absolutely. I’m a great fan of getting one’s house keeping sorted first. Keep aware of what is good for you, so if vegan isn’t right for you that’s fine; it’s not a case of vegan good, all else bad.

[Gaz227 in reply to SnazzyD]

Know exactly what you mean 👍😀

[SheffieldJane in reply to Gaz227]

That really sounds so positive Gaz! Good luck to you! 🍀

We have invested in a juicer and consume great quantities of spinach, like Popeye.

[PMRpro Ambassador]

Don't get confused about the discussion. If the diagnosis is RA or another inflammatory arthritis then the decision is completely different. Methotrexate is an add-on in PMR, in these other conditions it is a proven first line approach. In a patient with an undisputed diagnosis of PMR who has got to below 7mg pred there really is no good justification of adding mtx in the hope of reducing the dose a bit. In a patient with a different condition the rules change.

medicinenet.com/sapho_syndr...

A study did find that a strict vegan diet reduced the joint pain for 50% of the RA patients who tried it for a year. The reintroduction of even a very small amount of animal protein reversed the benefit and for half it had no effect at all. But always worth a try. I don't know if it also stops the joint damage - which the DMARDs do.

Just to say too - my daughter and granddaughter are both now vegan and have experienced various improvements in health conditions. The most marked is that the GD no longer ends up in resus on a regular basis because of her brittle asthma,

[Gaz227 in reply to PMRpro]

That’s a great result for your Granddaughter 👍, I am a classic normal blood marker person , I have had RF blood test before and it was normal , are there people with RA that like PMR have normal bloods or is that not the case , also can that apply to ANA and CCP blood tests ? If so it just puts me back in the might be diagnosis disease group, in which case do I accept the MTX or not , what dilemma . 😩

[PMRpro Ambassador in reply to Gaz227]

There is a form of sero-negative RA . I'm not sure about the ANA and CCP tests although this

"Anti-CCP is present in 23% of patients with early stage RA, in about 50% of patients at diagnosis, and in about 53% to 70% of patients 2 years after diagnosis. ... -A positive anti-CCP result is more reliable than a positive rheumatoid factor result for diagnosing RA."

suggests that false negatives are possible, expecially in the early stages.

[Gaz227 in reply to PMRpro]

Basically another difficult diagnosis, I think I am just going to have to rely on the Rhuemy’s discretion if I can’t turn it around with the diet and exercise etc, but I also have Sjogren’s syndrome to deal with so that night necessitate being on MTX .

[PMRpro Ambassador in reply to Gaz227]

I think its use in Sjogrens depends on the severity of the symptoms - I know several with it who are not on mtx.

[Gaz227 in reply to PMRpro]

Ok that’s good then , my eyes are the worst , but I potentially have Sappho’s thankfully not the skin aspect of it , but the joints across my chest, clavicles and sternum are very painful just had injections in AC and SC joints but it hasn’t worked the surgeon said it was a long shot looking at the MRI results but worth a go , so might be having op’s on them in the not so distant future, when it rains it pours . Thanks for the good info as always 👍

[Marijo1951]

My experience of methotrexate is different in that I used it initially to help me to reduce pred from 25 mg, quite successfully I think. Like the others I wouldn't start on it in order to reduce pred from 3 mg, but clearly you are looking at it in a different context now. If you do decide to take it, I hope it will be helpful to you.

Regarding adopting a vegan diet, one of my daughters was diagnosed with RA at the age of 14 in 1985. At the time the only treatment on offer was a painkiller Ponstan which did little for her. However at 16 she became a vegan for ethical rather than health reasons, her symptoms started to diminish and she stopped taking the Ponstan. She's remained strict vegan all her life and, although she has intermittent bouts of pain in her hands or in her left hip, she is miles from the state that I feared for her in middle age when we were first given the diagnosis. At this very minute she's out walking somewhere in the Lake District.

[Gaz227 in reply to Marijo1951]

What a fantastic result , thanks it really gives me hope , 👍😀

[PMRpro Ambassador in reply to Marijo1951]

My daughter didn't expect Nome to get past late teens - the doctors hadn't a clue how to manage the asthma and it was only a matter of time until they didn't ...