PMR and GCA

[redhouts]

I was diagnosed with PMR and GCA in April 2021, but I think had PMR for much longer. In 2019 had what was said to be tendonitis in one shoulder, and I was referred for physio. 2020 I had aches and pains which were diagnosed as arthritis and was prescribed medication and anti-inflammatories which did not help. In early 2021 started having numbness and tingling on the one side of my face and a feeling of shooting pains in my scalp, at the same time I was experiencing pain in both shoulders and my right hip. My GP sent me for a blood test which show that my inflammatory markers were high and significant, I was referred to a consultant Specialist Physician and Neurologist who said that my diagnosis was PMR with GCA. The physician prescribed pred 15mg per day for a month with a reduction to 10 mg and 5mg for the following 2 months, I didn't see any improvement after the first month, I was still in pain, the pressure on my face was there. I had a new symptom of painful lesions on my scalp. I revisited the physician and said the lesions were psoriasis part of the autoimmune diseases. He increased the pred to 20mg and added 10mg of methotrexate taken weekly, this was in May 2021. I had a couple more visits with him as I was still in pain and the pressure on my face and my eyes had not competed gone away. He almost implied that I should try a modulate the meds according to the pain. He never once mentioned tapering. I'm now back under my GP how has at least had me get blood tests done, which showed deficiencies in my VIT B12 and D for which I am now taking supplements. I'm still on the high level of both Pred and Methotrexate. I still have pain in both hips and both shoulders, facial tingling, and pressure in my eyes which burrly somedays . The worst pain is in the soft flesh in the upper arms, bums, thighs, and lower legs. I also experience numbness in my fingers and lower legs. My husband has to massage me every second day, this helps to alleviate the pain in the soft tissue for a day or so, I also do joga and walk some days to help with the pain and stiffness. I suffer fatigue and brain fog most days ... I have no idea how to taper the pred and or the Methotrexate which I believe can lead to liver damage. When I did try to reduce I ended up with serious flare ups , maybe my reduction were too steep. My GP is clueless, I don't think there is a rheumatologist here Zimbabwe, if there is they are probably very expensive. Any adivice would be greatly appreacited.

[DorsetLady PMRGCAuk volunteer]

If you have GCA then you certainly need a higher dose than 20mg to control it.

You might like to have read of this post -

healthunlocked.com/pmrgcauk...

…and also look at these from the charity webpage -

pmrgca.org.uk/wp-content/up...

pmrgca.org.uk/wp-content/up...

[redhouts in reply to DorsetLady]

thank you for your reply, I will read the post, and review the website.

[PMRpro Ambassador]

This paper may help your current doctors get a handle on the problems:

rcpe.ac.uk/journal/issue/jo...

which was written and presented to help GPs understand how to manage their PMR and GCA patients.

If your doctors are so sure there is GCA involved - then the starting dose for that is 40mg/day providing there are no visual symptoms or jaw claudication. What you were given was not only in the low side for PMR, their tapering approach was totally useless. These are chronic conditionsand they need enough pred for long enough.

I have to say - I do not understand for the life of me what stops inexperienced doctors from using the internet to find the guideliness for managing a disorder they haven't come across enough to know about. They don't have to tell their patients they don't know if they are embarrassed!!

[redhouts in reply to PMRpro]

Thanks for the information, I will try and get my GP to read, it. I agree with you it's very frustrating when there is so much information on the internet, I'm learning about this condition from there, not from my service providers.

[PMRpro Ambassador in reply to redhouts]

Not that unusual! We've walked the walk - and some of us are closely involved with research rheumies so keep our fingers on the pulse better than they do.

[pollyg263]

yes it took 18 month for me to get the diagnisis of pmr. same as you i was told it was rhumatism then pulled muscels then something else . but as soon as i was put on pred within a week all the pain had gone. i stayed on bred for 7 years eventually weaning off that was 3 years ago and still no pain so dont rush to get off pred if you do it gradually it does work, now at 80 years old i am still pain free

[Sharitone]

Hi redhouts! I am also on pred, and MTX, as well as Tocilizumab/Actemra. You are right: MTX can cause liver damage in some people and you should be having regular blood tests to check this. that shouldn't stretch your GP too far! but otherwise, tapering is not such an issue with MTX as it is with pred, so you probably need not worry about that for now - provided your liver function is checked.If it is any comfort to you, my face tingles and feels under pressure too, the intensity varies with the degree of fatigue. Sometimes it feels as though my face is trying to prise itself off my skull, but after about a year of this, it doesn't seem to have progressed. When I told the rheumy , he said 'Well, I don't know what that is!'

[redhouts]

Thanks for your words of encouragement it helps to know that l'm not alone.. Yes have been having regular blood tests, so far so good.