From GCA to Myasthenia Gravis

[Rancho]

Had PMR since 2009 and treated for GCA from 2013 including negative TAB. Been on a pred roller coaster since with 3 or 4 episodes of double vision per year and pred up to 60 and then the long trip down only to go up again.

In the first couple of years the high dose of pred resolved the double vision fairly quickly but over past 3 years I could take 80mg for 3 weeks until it resolved. In the early days I felt I had scalp tenderness and jaw claudination but not so in last couple of years so this year I stopped upping the pred when double vision struck and it resolved in a few weeks normally. Different doctors I saw had 4th nerve palsy and WEBino as possible eye issues but then bounced me back to Rheumi as thought it was really GCA.

With the latest episode they did an MRI scan which was clear and bloods for thyroid etc which were all clear.

As my eyelid partially closed on holiday recently when I checked this on internet Myasthenia Gravis came up. I asked for a test on this and the antibodies were very high so now referred to Neurologist with suspected MG which the new eye Consultant I saw thought I’d had all along

Just interested if anyone else has had a similar experience?

Thanks

[SheffieldJane]

What a horrible time you’ve had with all this. I imagine that yours is not a typical experience. You must be very worried. We knew that muscle weakness was in there with the side effects and you have had to take repeated high doses of Prednisalone. I hope that the Neurologist appointment is a positive one. You’ve been through so much already.

[PMRpro Ambassador]

You might be interested to see this

hindawi.com/journals/crirh/...

which reports on a patient with both - proven by antibodies being present and a positive TAB. MG is often found alongside other autoimmune disorders but although it is rare together with GCA, it happens.

This is a thread from a couple of years ago

healthunlocked.com/pmrgcauk...

but whether the two who mention having both are still on the forum I don't know. You could maybe try sending private messages to them - they may still be receiving email notifications. As you see, there weren't many then. There is also a single post on the patient forum but not from someone I recognise as still being around on the forum.

As piglette said there, there is no 100% certain diagnosis of PMR or even GCA when the TAB is negative. As I understand it from a neuroopthalmology textbook, "4th nerve palsy" can apply for a range of causes which include GCA and myasthenia gravis amongst others - so really you would think it should be a rule-out in GCA with negative TAB.

Do hope this neurologist is good and finds a good management plan for you. No doubt pred will be involved somewhere along the line!

I assume you found this on your explorations?

rarediseases.org/rare-disea...

[Rancho in reply to PMRpro]

Thanks as always for the quick and knowledgable replies and the links which are helpful

Just getting my list of questions and issues sorted for neurologist for when I see them next week.

Thanks again

[piglette]

A friend of mine has MG, initially he really had problems, then he was given PRED! He said it changed his life. He just takes his dose every other day though.

[saffron52]

Hi Rancho I have a friend who was diagnosed in her late 20's with MG and is now 73 and going strong. She goes to the National Hospital in London where MG is a specialty. Every 3 months she goes for Intra-venous immuno-globulin treatment which strengthens her muscles and helps with all the areas which MG weakens. She herself has no problem with her eyes but her voice/strength goes as she gets nearer her treatment. Another MG patient she has known for a long time from hospital visits has eye problems and IVIG has helped her. She originally started on a high dose of Pred 100mg, once they found out what it was after trying to kill her off many times, but, that was long ago and they did not have tests. She now takes only Pred 2mg every other day and leads life to the full even though she is older now her MG as not really got any worse and remained stable. I know she has joined the MG Association and was a founder member and helps with info. Hope this help and good luck with everything. Take care Angie xxxxx

[Rancho]

Thanks Angie for taking the time to respond, very helpful and hopeful, best wishes Mark

[pollymarierose]

I just read your post from 8 months ago about gca to Myesthinia Gravis. I've been on same roller coaster as you but not as long. I was on high doses of prednisone for pmr/gca. 70mg. It took care of pmr pain but only 50% of gca pain. I had xrays, ct scans, saw 3 rheumy's, 2 emergency doctors, vascular surgeon, and was given 2 answers back and forth. It's gca. It's not gca. Oh, I should mention I had all of the symptoms of gca (low markers), but I had horrible weakness, fatigue, blurred vision, droopy eyes (usually only one but sometimes two). Finally on this last Monday, I saw a Neurologist. I walked into his office and was ready to just give up. He mentioned MG. He stressed MG. He explained how easy it was to get overlooked because pmr/gca is a rheumatoid autoimmune disease (which neurologists know very little about) and MG is a neurological disease which rheumatologists know very little, if anything about. Also, a person can have pmr and mg together. Suddenly, things are making sense. I am waiting for the blood work results and hoping I can finally move forward.

I'm glad I saw your post because I know I'm not alone here. I was being told that I was a mystery and that's not a great word when you hear it from a doctor.

Thank you and I hope you're doing well.

[Pollynolongerinagony in reply to pollymarierose]

Hello pollymarierose from a fellow Polly! I do hope you were diagnosed and treated happily after that nightmare jigsaw puzzle of PMR GCA MG symptoms. Its like 3 jigsaws all thrown on the table, someone's hidden the lids so you don't know what the final 3 pictures look like, and with no final picture to guide you, your mission is to find which bits belong to which picture, so you can get treated for each condition. May I ask what the outcome was as it will be of great help to me. yours, sincerely, hugs from a fellow Polly x

[Cobalt2sister]

Hi. I see this post of yours from some years back so taking a chance responding. Maybe you're still there, in which case... I have GCA only recently diagnosed.. March and under care of neuro-opthamologit and rheumatologist but they now believe I also have my as the now have my as the no have myasthenia gravis. Two positive ice tests. I have EMG and single fiber EMG scheduled for July 20th so I can't tell you for sure till then! Hard to tease out stuff, for instance is my intermittent leg weakness from prednisone ( known to effect leg muscles) or from MG? Well, hope you're doing well. I think its probably hard to find people with both GCA and MG.

Be in touch if you're around...peace...