GCA. Osteo. Esoph issues-? pred or boniva side ef... - PMRGCAuk

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GCA. Osteo. Esoph issues-? pred or boniva side effects

Spanky2019 profile image
11 Replies

The "great ones" who have pulled many of thru the worst days know my history but symptoms not sure about. I can only remember parts of the first months I was sick-April 2019 to ongoing. Even the past couple months I actually bounced checkbook twice-Bank forgave me b/c Never have done that. Now found out I made major error in completing important documents (In May-probably on 80 mg pred then) for my husbands insurance. It may cost us big time. I've always set up his rx too but just haven't been able to get that right for awhile either. Can pred cause these types of problems? Second concern is pretty severe low back pain that started abt 2 weeks after first boniva i.v. I've had disabling tingling & weakness in lower back/legs for months but not real pain. Just had xrays, no spinal fractures but multiple bone spurs on spine. Rheumatologist wants me to come in to discuss. That's unusual to be called in early. And my primary provider, who has been my rock & lifesaver is leaving the practice next week. So won't have her to really explain ins & outs of all this. That makes me very sad. I thought bone spurs are common as one ages. Does it just depend on where the spurs are located on spine? So sorry I'm such a pain in the bum. Any info is always appreciated.

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Spanky2019
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11 Replies
SheffieldJane profile image
SheffieldJane

Never ever a pain in the bum Spanky!

I didn’t trust myself with intricate business transactions when I was first ill. I was only on PMR doses but my husband would double check what I did, at my request. My confidence was very shaky. So heaven knows how you feel on those high doses. I am glad you are seeing your Rheumatologist soon for your troubling symptoms. I wouldn’t want to hazard a guess. You maybe able to obtain a doctor’s note, stating the effect of high dose Pred.

Must go back to sleep now. It is early a.m. in the U.K. x

SnazzyD profile image
SnazzyD

Oh dear, I do feel for you. On mod to high doses (not as high as you though) my judgement and lapses were quite bad. The racing mind thought it could handle it but it was like racing around at top speed collecting chicken eggs with a basket with a hole in it. I came across some inexplicable errors in some home accounting and thought, “enough is enough” and decided not to trust myself with anything; upsetting after being someone who could keep lot of things in my head. I didn’t drive for this reason until it improved and I was forever getting someone to check anything important. I also had a rule to never leave a pot coming to the boil because my tendency to distraction was so great.

Spanky2019 profile image
Spanky2019 in reply to SnazzyD

Yes, thank you. I still don't/can't drive. I knew I had problem & thought I was being extra careful. Thought I was more able than I was. It is what it is. We'll try to explain & see what happens.

PMRpro profile image
PMRproAmbassador

Both the vasculitis itself and the pred can lead to brain fog - and even though I would say it doesn't affect me generally I couldn't even begin to fill out forms that really mattered without some help or having them checked. And I am very aware how much illness affects our confidence and ability to do such things. But at 80mg? Very definitely a possibility.

Bone spurs may be common as we age - but it all depends where they are as to whether they cause trouble.

mayoclinic.org/diseases-con...

Spanky2019 profile image
Spanky2019 in reply to PMRpro

I should have gotten help. I'll see what Dr says as far as back/legs. Ine day at a time. Thank you as always. Thank you as always.

PMRpro profile image
PMRproAmbassador in reply to Spanky2019

There does come a time when we have to give in and get a hand from someone. It doesn't always mean we are old - just not as well as we were.

You have a lot of things to cope with - any one would knock some people flying. You have multiple "bereavements" to face up to. One of any sort is bad enough.

Hi spanky, I can't imagine the foggy head gca and high dose pred gives you. Before dx with pmr I really did think I was going senile. Add a bit of pred, not the mega dose you were on and I was off my head some days. Have you spoken to insurance or is it not worth pointing your "state of mind" when signing. Insurance companies haven't got the best reps for being responsive though have they?

Maybe in addition to the spurs your doc wanted more continuity of care and maybe rheumy may do more. Hopefully you cget a primary that you like close by. Keep us in touch re appt and your search for new. Dr. You may get an even better Dr! 🌻😊

Spanky2019 profile image
Spanky2019 in reply to

Hoping dr changes will work out. Never had Primary that was knowledgeable and really cared what happened. Surprised how stronglyI feel about losing a doctor. My eye dr is also retiring so I feel a little abandoned but emotions definitely are heightened since being so sick. I'm also on full dysphagia diet now ( no cheating due to serious choking events)& it too is a loss not to be able to eat normally. There is a kind of a grieving with it. As far as insurance, I'm putting together paperwork & let the chips fall. My hubby has mild dementia, had total knee replacement in July, and he's never been good at paperwork, but we'll get through it together. I will include our health status with insurance rep to see if that can help. Would have asked dau for help but she's been dealing with illness, & for nearly 2 months she's had C. Diff. Terrible diarrhea & contagious if not very hygienic. My dr doesn't even want me around her due to my compromised immune system. I'm hoping back/leg issues will resolve on their own but I'll see what dr has to say. I always like to blame everything on prednisone, though in reality it is a lifesaver. Thank you so very much.

in reply to Spanky2019

I hope everything gets sorted. You must be missing dau but both of you would be in a quandary if you added c. Diff to your list. 💜

Mikb profile image
Mikb

I had a lot of brain fog at 80 mgs. For example, I got lost going up to the family cottage i had been driving to for 40 years. And there were more days than not I knew I shouldn’t drive. The brain fog improved as the dose lowered.

Spanky2019 profile image
Spanky2019 in reply to Mikb

Thank you Mikb. It is better.

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