Hey all other GCA sufferers.....I had a TA Biopsy after being in hospital for 5days before General Surgeon could find the Artery .... all the other Drs working on my case were convinced I had it due to test results and symptoms.....anyway I'm home now and going through withdrawal of Prednisone which my GP said to stop.....and now I have an awful Tremor in my hands and terrible Balance problem........don't know if it is result of Biopsy but my Hands seem to tick every heartbeat????? Has anyone else out there had any thing like this happen to them and if so was it withdrawal or permanent damage due to op to get piece of Artery......I'm really hesitant to mention it to my GP as he was so against me having it done even though I was practically kidnaped and put in taxi from Surgeon appointment and held prisoner in hospital with no pajamas or toothpaste etc.....anyway Biopsy was negative although some damage there that I don't u der stand ...surprise surprise after huge doses of Prednisone. Interested if anyone else is in my situation or have been there.....feel alone and somewhat fearful this tremor is permanent😓😓😓😓
Post Temporal Artery Biopsy tremor: Hey all other... - PMRGCAuk
Post Temporal Artery Biopsy tremor
I am sure others more knowledgeable than I will post but I am sure that sudden withdrawal of steroids carries risks. The following link is to the UK Official clinical guidelines National Institute of Clinical Excellence NICE) - see adverse effects and withdrawal sections. cks.nice.org.uk/corticoster...
Sympathy is all I can offer alas. My biop was quick painless and positive, after losing sight in one eye to GCA. After that just usual pred side effects, stiff joints and balance, etc. None such as you are experiencing, so I think you had better get a second opinion? Good luck with it and take it slowly on the reducing pred plan. Raymck
8sandylou, You should not just stop steroids, it is quite dangerous. Ask Dr for them back and gradually reduce,the doctor should know this. I am in my second remission it took me 2 yrs to get off pred. Apparently that is quite good it affects people differently.
Take care hope your tremors soon stop.
Highwood xxx
I'm sorry - I think your GP is being totally irresponsible not only in telling you you shouldn't have the TAB and ignoring other doctors so blatantly but also to "stop steroids" just like that. That is downright dangerous and could result in an adrenal crisis - if you are lucky it won't but it is possible.
The TAB was probably negative because it is positive in less than half of patients anyway but you had also already been on high dose pred for some time first. It doesn't mean you don't have GCA so if you find the GCA symptoms returning I can only suggest you go back to the hospital - because your GP isn't going to believe it is he?
Oh my Goodness ! Why has doc stopped your Prednisolone? I hope it's not because Biopsy was negative!
Thus is very dangerous, please go back to doc and talk to her.
Yup he circled the negative bit on form and handed to me....but before that it mentions..Focally there is somefibromyxoid change of the Intima and disruption of the elastic Lamella????
Been worrying about you. How are you feeling today?
Pretty crappy as, my GP doesn't believe I should of had Biopsy, and is cross with me.....took half a 50mg prednisone....will see what I come up like tomorrow...my head is really swollen along Biopsy cur.....any worse tomorrow and I'm going into ED as they started this whole ball rolling....
Hi sandylou,
Totally agree with others, and probably going to get myself in trouble again, so I'll apologise in advance to Kate and those good doctors who may read this - but in my opinion your GP is being irresponsible by stopping your Pred like this.
All the paperwork tells you, if you've been on Pred for more than 3 weeks not to stop it suddenly , and the blue card, which you should have been given at the initial prescription re-inforces that advice.
Although we can't expect our GPs to know everything about every tablet they prescribe, this is unbelievable. As PMRpro quite rightly say - a negative biopsy does not mean you don't have GCA.
Please get a second opinion ASAP.
Sorry to hear you feel so alone and fearful. My biopsy was a clear negative and so it was decided by my Rheumy that i didn't have GCA. He was wrong. My symptoms persisted and a I ( in so much pain) insisted more tests. They diagnosed my GCA with a PETCT scan. So two things, just because your biopsy was negative that doesn't mean you don't have GCA. And you mustn't just stop taking Pred.. Slow taper off ...always. X
I had same biopsy even though the consultant toldme it would be negative due to the period I had been on steroids. I also get shakey hands occasionally. Steroids were stopped suddenly and now I can only take them if my broncectasis gets bad. I know that this wont help you. But maybe do check it out with gp . Sorry you are suffering.
I can definately comment regarding how dangerous it is to stop steroids suddenly as I was diagnosed with steroid crisis. Nothing related to pmr.....i lightly touched a foxglove plant and 3 days later I had the most horrendous urticarial rash that covered me from chest downwards for 6 weeks. I was put on 20mgs of pred for 8 days and the very next day after stopping I started to feel incredibly ill...sick dizzy losing my balance. Initially the drs diagnosed it as labyrinthitis as I had just come back from holiday ( I started the pred the night before we went away so I had a miserable hol as the heat exacerbated the itchiness) but after 3 days I was so ill and thats when the dr diagnosed the crisis. I went back on the pred for another 10 days and then weaned off. Never stop them suddenly!
You have described exactly how I feel. When I'm not asleep (nightmares) I am dizzy, walking into things......perspiring ........sore jaws.....teeth feel loose.....sacroiliac Joint pain even in the one that wasn't used for bone graft....sore hand/thumb joints and nagging background headache......and bizarre tick in my hands that seems to corespond with my heart beat..but not sure. Thinking bout taking Prednisone again and weaning my self off. How wicked and pernicious is it? And so absolutely necessary for GCA sufferers.....note I'm in complete denial I could have it..lol
Don't know which is worse ...the side effects of Prednisone or the withdrawal but scared enough to go back on Prednisone....just took half a 50mg tablet and will get hospital script filled to wean off...ergo bypassing my GP......I know he means well but also know he has a major rift with our ED dept.....and believes if I treat GCA it will be the end of me because of my Spondylolisthesis. The worse of two evils??? Would just do anything at the moment to feel sane and well....yes I am also having Psychological effects as well. Thanks heaps for your responses as living alone it's easy to allow oneself to feel slightly insane and slightly Suicidal.....very slippery slope...which I'm really disappointed with my GP for not foreseeing. Xxx
Well peeps just researched Amatryptaline as doc put me on fairly high dose so I could sleep while getting over the Prednisone and it would seem that all my symptoms can be explained as side effects of that???? Sheesh and I've started taking Prednisone when all I needed to do it would seem is stop the Amatryptaline ?????
8sdandylou, of course you are having some psychological problems. Who wouldn't be? I know nothing about the Amatryptaline but, in 15 months, know about GCA and PMR. Many of your symptoms seem consistent with GCA. I only have symptoms to go by....negative biopsy, low sed rate and CRP. Most ER doctors don't believe I have either. However, after being put on 60mg prednisone and a week later doing without....I had vision and hearing loss on my left side. Was immediately put back on pred. At the moment, am bedridden after an error in dosage that took me to the hospital.
Please be careful. This is your body and only you know how you really feel. Better safe than sorry.
BTW, do you have a close friend or family member who could help you with the doctors.? You going one on one could be very intimidating.
Thoughts and prayers are with you.
I've been off steroids for a week and felp terrible...took half 50 mg tab 2day and a lot of my shoulder, back pain settled down....but still got the niggling pain in my left temple and eye....
I forgot to mention I'm MRSA positive and the wound from Biopsy has flared up. Off to hospital l8r in morning ....wound too close to brain for my liking with infection....
Well after sitting in ED for awhile just saw Dr and he prescribed Clindamiacin for infected surgery scar.....insisted like my GP that negative means NEGATIVE and told me not to take any more Prednisone under any circumstances......probably coz he saw how manic I am on it as I took 50m tablet this morning for fear of the infection so close to brain....so I've exhausted all avenues but will be monitoring my left eye vision closely in future....😁😁😁
Well some days later I have never felt so scared or alone/ Alienated from Dr in my life, Have had to go back to hospital as I'm really intimidated by my GP and his attitude.....now have infection in Biopsy scar affecting my face jaw teeth!!! Dr at hospital put me on Clindamiacin antibiotics as MRSA affects what works for me....he was adamant and arrogant about the results of my Negative GCA result...even though there is Lamina wall Change (Fibromyxoid) I queried him several times that did he think this was the right process for me? He was adamant NO MORE STEROIDS - NEGATIVE MEANS NEGATIVE!!! Was smarmy enough in his attitude for me to believe when he went to get script he had been talking to my GP...... Paranoid or what?? So I'm at home alone with only my Puppy and cat to tell how fearful I am...last time I had Clindamiacin for wound on Hand that got Cellulitis ended up having me flown out by RFDS TO Perth for Plastic Surgery and 3 months growing back flesh. Don't think that would be option with skull??? They can cut your hand off, but head? Checking my sight every time I wake out of Amatryptaline fog......think I just gotta suck it up and taxi to Dr surgery. He ripped off butterfly strip last time I was there and wound now gapping and infected. Chemist insisted I cover it and sold me plasters that are in my hair and on wound ...tried my best.....trying not to looking at their sight but I've only had positive uplifting response on here as opposed to GP & Hospital now I'm Outpatiend!!! Thanks especially to PRMPro....and everyone else😃😃
Not what you're looking for?
You may also like...
Temporal Artery Location Difficulty Locating for Biopsy
Temporal artery biopsy
Temporal artery biopsy
Just wondering how many have had negative temporal artery biopsy?
Temporal artery biopsy
Related Posts
Temporal Artery Biopsy
Temporal Artery Biopsy
Feeling less pain after temporal artery biopsy
G C A/ Temporal artery biopsyModeration team
