Stuck on 13 mg for 4 months, not sure what to do - PMRGCAuk

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Stuck on 13 mg for 4 months, not sure what to do

Mstiles profile image

Hi everyone,

I’m feeling very despondent. Last June I was down to 9 mg and had a wonderful rheumatologist who listened and worked with me. (Originally diagnosed in January 2018 with PMR and GCA, put on 40 mg pred). She left the practice in June and I’ve been without a rheumatologist ever since.

I live in California and with The fires and blackouts, we had four blackouts), this summer, I guess the stress of having to evacuate at a moments notice caused a flare and I went to 13 mg where I’ve been ever since! Not to mention Covid stress. And some stress with my son.

Then came the election, etc, more stress and sporadic pain in various places, hips, knees, back, wrists, that I’ve been trying to sort out. So confusing as I’ve also had a lot of stiff neck and occipital pain in the same place as the original GCA pain. My vision is definitely worse.

I’ve been relying on my GP for prednisone refills which has worked so far. She’s not too knowledgeable about PMR/GCA, and I’ve not wanted to discuss it with her much as I’m afraid she’ll want to lower the dose. Had to straighten out the dosage with her earlier and it was stressful! She does listen though.

She’s ordered X-rays and referral to an orthopedist which I haven’t done. Just pooped out!

I want to start tapering again. I’m at the same dose I was a year ago, but I’m afraid! I need cataract surgery, my vision is getting worse.

My feeling now is that the pain is joint and maybe weak muscles related. Seems more like arthritis pain. My CRP and sed rate are back to normal after being raised this summer.

I just feel overwhelmed and too tired to sort any of this out and see more doctors and have more tests! Maybe not a good idea with Covid rampant now anyway. I think I’ve given up on finding a new rheumatologist.

Sorry for this long whine!

13 Replies
PMRpro profile image
PMRproAmbassador

info.sjogrens.org/conquerin...

There are 2 new entries - look at them, especially the last one! What does she think an orthopedist will do?

Mstiles profile image
Mstiles in reply to PMRpro

I can relate to these types of fatigue, for all chronic disease patients or are you saying I might have sjogrens too?

Maybe I misspelled, I meant an orthopedic doctor to check out the hip, kne, neck pain. Maybe my slight scoliosis is causing the pain?

PMRpro profile image
PMRproAmbassador in reply to Mstiles

It applies to all autoimmune disease - it was just the Sjoegrens society that compiled the list.

No, you were right enough. But my experience of the average orthopedist would not encourage me to be too hopeful! I have a scoliosis - it gives rise to muscular pain but the orthopod I saw privately after an RTC (paid for by the other person's insurance) told me it was wear and tear and I'd have to learn to live with it! To be fair, when my back muscles went into total spasm a year or two later it was the hospital orthopedist who recognised the problem! The pain clinic and the physios have got me to a state where the pain is only very intermittent when I do the wrong things - rather than not being able to stand or walk for more than 10 mins without pain.

I am sorry that you are not doing too well Mstiles. I am concerned that you are experiencing a return of your GCA symptoms - this does need to be investigated. You’ve never been on a very high dose for GCA. I can empathise with the feeling that it is too complex and futile to try to unpick all of this. You do however need to prioritise and deal with the danger to your eyesight. The stress has been relentless, both personal and external for you. No wonder you feel worn out. Give your doctor a chance, she maybe better than you give her credit for

Sorry to hear you are feeling the strain especially when you've lost one of your pillars of support in the rheumatologist. One ray of hope is that at least your doctor listens and you've argued your case with sorting out dosage, something to give you more confidence in talking to her in the future.

The feeling of being overwhelmed is familiar, not only by the stressful times we're living through but also the daily family difficulties which are hard to deal with and the seemingly endless list of ailments that come with our condition.

It all becomes a big jumble of 'stuff to deal with' and brain fatigue sets in. Perhaps the best way forward is to prioritise, identify the major issue you're really worried about, such as your eyes, and meanwhile follow up on your orthopedic referral - small steps build your sense of doing something and lead on to solutions. One of which is for your doctor to refer you to a rheumatologist or do a little research online to find one (not sure how the US system works but there'll at least be information online).

Meanwhile, you have a small army of supportive fellow sufferers on here who understand the 'lows' of PMR/GCA. All wishing you strength and success.

Whine away ! Never give up . You should be on Alendronic acid. One 70mg a week. Runs alongside Prednisilone. Helps with bones when on steroids. Change your doctor. I'm in UK so don't know how things work in States. Sorry things all round get you down but your health is number one.

MrsNails profile image
MrsNailsPMRGCAuk volunteer

Hi Mstiles

Bless You, things have been tough for you & no wonder you feel awful but l think by writing the post you know that & want to start to take charge of the situation.....

It would be a good idea to get the X-rays done & go to see the Orthopaedic Guy as there may be other issues such as Arthritis that’s causing you pain, he/she may be able to recommend a new Rheumatologist too!

I’ve been stuck up between 15mg & 12.5mg for the last two years after they stopped the Methotrexate & am still at 13.5mg tapering to 13mg but now back on a proper dose of MTX so hopefully l can start reducing the Pred again.

I do hope things improve for you soon.

Kind Regards

MrsN

I definitely hear you. Life can beat us down when we have to cope with multiple issues at once. I’m not as resilient as my younger self. Just sending hugs. 🤗🤗

Hi, I am sorry to hear what you are going through and the fires in California are just awful and it is sad. However, I think it is vitally important that you visit a Rheumatologist. I am in the United States. I no longer take prednisone but I found that my Rheumatologist, was by far, extremely more knowledgeable on this condition than my internist (who originally diagnosed my issue through blood work). Please make every concerted effort to find a rheumy so that your doses can be properly managed/maintained. ; )

Hi Mstiles - well you certainly have enough sources of stress to set almost anyone 'off' !! How terrible - we in OZ do understand better than many the tragedy and enormity of fires and what they can do with the devastation they have caused here and similarly in your part of the world.

Regarding your current situation with PMR/GCA I can relate to the frustration of finding myself back at a similar Pred dose to the one I was on a year - no really two years ago. Despite reading that for some of us it may be a 'long haul' I have continued over the last 4 years to do the slow and steady taper thing - keeping an eye on my bloods as some kind of rationale for treating what has sometimes been another 'flare' or build up of inflammation. While these markers have not been entirely consistent in terms of my own experience they have sometimes reflected a trend or change of direction. But now after so long I have lowered my expectations and although now back 'down' to 15.5mg (the lowest I have been all year) I am almost 'happy' to be here. I did relent in the end and have been taking 10mg of Methotrexate weekly for the last 2 months and I am suspecting it is starting to help as I have been feeling a little 'better' overall (less fatigue thank heavens).

We are all obviously individuals and from what I have read about others' experience of GCA I feel I could sometimes have been reading about a very different disease trajectory in time and even 'content'- although some things still jump out when you describe your experiences. I would be concerned about your current dose as perhaps (sorry) too 'low' :

eg - the ' stiff neck and occipital pain in the same place as the original GCA pain. My vision is definitely worse.'

Of course your vision will be affected by cataracts and hopefully you can get those attended to before tooo long - but increased inflammation will do that too - it does noticeably for me when I have a 'flare' and I have had my cataracts 'fixed'. The stiff neck sounds like the PMR element and the occipital pain returning is almost exactly a classic 'marker' for me indicating my GCA is not controlled 'enough' at that point. This is not 'good' and suggests you need a medico who will recognise that ! Perhaps even if hesitant like I was you could try some Methotrexate - I luckily have had no noticeable side effects so far but I would have taken Actemra if it had been available to me - but I didn't fit the OZ 'criteria' despite my recalcitrant GCA.

Hopefully you can get some assistance soon although it is certainly challenging in the USA at present I know.

Wishing you all the very best

Rimmy XX

You MUST seek the help from a Rheumatologist. They are much more on top of this disease and will monitor you closely with bloodwork, office visits, etc. GP's are not adequate for this type of issue so please, don't delay. Find a Rheumatologist immediately and get the help you need and deserve!

Cataracts can worsen ('progress' in doctor lingo) from exposure to UV (A or B). Outside protective eyewear (sunglasses) even or especially on cloudy days is urged.

And, if you wear eyeglasses with anti-reflective coating, you're at higher risk (of UV 'back scatter') -- I wear an insert style of sunglasses to protect against that.

Mstiles profile image
Mstiles in reply to wbiC

Thanks for the information. Wish my opthomologost had mentioned this from the beginning!

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