GCA Symptoms?

[Missus835]

Hi folks. Over the last 2 weeks I've started feeling weaker (than normal). Legs are rubbery and I feel quite shaky. An obvious shake, but also trembly inside. Eyes are not good, but Ophthalmologist says cataracts. Standing at counter the other night, thought my legs were going to let go. To boot, I've lost 40 pounds (a lot is muscle mass) since end of June. 10 of those since Dec. 13th. I HAD an appetite, but was unable to eat a lot at one go, now my appetite is pretty much gone. My scalp is tender in that it feels like hair is lying the wrong way or parted on the wrong side. (This has been for a long time.) I have severe osteoporosis with compression fractures and muscles are pulling tight around stomach and diaphragm. Swallowing is difficult, but I'm not afraid to swallow. Pills are most difficult and if anything is to get caught, it's a pill. My weakness seems to escalate in the afternoons up to supper time. Went to GP this morning and have to go for endoscopy. Niggling pains in breastbone and at bottom of breastbone to the left is quite tender. No jaw pain. Tinnitus often and loud. Ears back up especially when I'm flat on my back. Back of left arm gets quite painful and base of skull. Occipitals often need massaging with Tiger Balm. Neck is tender. Although moon face is pretty much gone, left side of face gets red and puffy, as does left ear get hot and red. At 12 mg. Pred and expected to reduce (by rheumy) to 10 this week, but am supposed to be at 10 already. Wondering if her quick tapering plan ☹️ has set me at odds, because I was doing relatively well prior. Bloodwork done Tuesday is normal. Go for routine bloods March 8 (CRP and ESR will be checked). What are some obvious or non, of non-cranial gca? I looked for FAQs but could not locate. Thanks all!

[DorsetLady PMRGCAuk volunteer]

These are in FAQs - and both have links to studies -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Missus835 in reply to DorsetLady]

Thanks DL. Darned if I could find 'em.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Under Extra Cranial GCA/LVV - not necessarily obvious unless you know!

[Missus835 in reply to DorsetLady]

I also forgot to mention the soaking night sweats in my post. Scary stuff as I have had a niggling feeling about this. Will call GP tomorrow and hopefully get to tell her about these articles.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Definitely a lot going on, and certainly need investigating- doubt it’s all down to a fast tapering regime…

[Missus835 in reply to DorsetLady]

I agree about the fast tapering regime. I just left a voicemail for the Rheumatolgy Nursing Line for my Rheumy. Whether she receives it is another story. They triage their messages. I may have to go thru my former Neurologist, as I have done in past days.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Not helpful…

[PMRpro Ambassador in reply to Missus835]

They are always something that should be taken seriously.

[Missus835 in reply to PMRpro]

Oh I am Pro. Although I don't understand all the medical terminology, I definitely get the gist of the symptoms. Now to get the powers that be to listen.

[Nonameme in reply to Missus835]

I so understand you could be describing me. I have a thread absolutely no idea how to link to it, but saw emergency maxofacial a dental nurse I suspect and no real concerns ordered a mouth guard! Due to another problem I had a Buprenorphine patch for 2 years which I stopped suddenly, no side effects of stopping but the pain it was diagnosed for is excruciating and this added pain is making it unbearable so I can empathise with you. I am under investigation for PMR so just starting my journey I do hope you get a good outcome.

[Missus835 in reply to Nonameme]

Thanks for your reply. I do have a bite guard for TMJ/TMD. I wish you all the best and hoping it's not PMR if you're still under investigation.

[DorsetLady PMRGCAuk volunteer in reply to Nonameme]

Do you mean this recent post? If so, then Missus835 can se it.. if not just ignore me..😏

healthunlocked.com/pmrgcauk...

[Nonameme in reply to DorsetLady]

Thats the one thanks DL