Has 3 years on Prednisolone caused all these problems?

[CarolF1312]

Hi All,I haven't posted for a while but regularly read the daily highlights and continue to learn about our condition and take comfort that there are others who understand the difficulties we face living with PMR.

The last few weeks, have been challenging for a few reasons. I'm currently 3 weeks into tapering from 2mg to 1.5mg ( started Pred June 2020) this isn't going too well as I'm experiencing a lot of stiffness.

I had a routine Rheumy appt. mentioned taper problems but was advised to continue as "likely steroid withdrawal rather than active PMR" I was also told my recent Dexa scan showed there has been deterioration in Femoral Neck from -2.0 to -2.5 since previous scan June 2020

This despite my efforts to eat well, keep walking and take Daily Calcium/D3 and K2. I do not take weekly Alendronic Acid. Rheumy wants me to have infusion of Zoledronic Acid. I really don't feel comfortable with this and would appreciate thoughts from anyone who has experience.

Next day I had a GP appt. to review a recent change in a mole on my leg. GP a little concerned and referred me to Dermatology. She suggested that 3 years on Pred would make me more susceptible to skin "problems"

Last but not least, this week a thorough eye examination to review possibility of lens replacement surgery. This revealed CSR (central serous retinopathy) in my left eye. According to ophthalmologist most likely due to long term steroid use. Lens replacement not possible until this has been sorted. I have a none urgent referral to eye hospital.

All in all, not a good few weeks. Constantly battling with myself that I need Pred to control PMR but bemoaning the damage it appears to be causing.

Apologies for the long post but would appreciate thoughts from anyone who has experience with any of these issues.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear your issues - one’s enough at a time…..

had a routine Rheumy appt. mentioned taper problems but was advised to continue as "likely steroid withdrawal rather than active PMR"…

Not sure I totally agree - more likely dose slightly too low for PMR - maybe try going back to 2mg and see if that helps. At such low doses 0.5mg can make a big difference….and although a slower tapering plan does make the drop easier, if you’re too low, you’re too low.

Think the femoral neck reading is very often the worse, and yes it has deteriorated, so maybe you do need to think about something, how are your others readings? Can’t comment on Zolendronic Acid, sorry but there are others on it… and maybe look at ROS site -

theros.org.uk

Pred can make skin thinner, so maybe more prone to issues… hopefully it’s nothing serious, but at least GP has done sensible thing and referred you to specialist.

Cataract replacements quite common, and CSR is mentioned from time to time, hopefully some with experience will be along shortly.

Sending good wishes 🌸

[CarolF1312 in reply to DorsetLady]

Thanks for your very prompt reply DL.I was going along quite comfortably on 2mg but all these other issues coming to light have put me back into the mindset of " must get off Pred "

I don't have my full Dexa scan report as Rheumy couldn't print at the time. Promised to send to me with their copy letter to GP

I'm hoping as other readings weren't mentioned they're not too bad 🤞

[Longtimer in reply to DorsetLady]

Just testing, my tablet i s flitting all over the place.....it seems a few minutes ag o I m ust have pressed cancel!.......I have now been welcomed to join!.......any suggestions?.....

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Other than working through this, not really. But if it’s persists you need to contact HU -

healthunlocked.com/pmrgcauk...

[Longtimer in reply to DorsetLady]

Thank you......

[PMRpro Ambassador in reply to Longtimer]

I've had that a couple of times. Try rebooting the device ...

[Longtimer in reply to PMRpro]

will do thanks, it’s not fair, why isn’t there a device to reboot me!

[PMRpro Ambassador in reply to Longtimer]

If only ...

[piglette]

I think if you are having trouble reducing to 1.5mg after three weeks, I would stay on 2mg for a while and then try again. I disagree with your rheumatologist that it is steroid withdrawal. If that were true it should have lasted much less time. Much more likely that you have gone a bit too far for the time being.

[PMR_sufferer1 in reply to piglette]

My views are that if you worry about the effect of tapering to 1.5 pred then just take 2. Its your body and you know how ypu feel. The problem not doing this.is yhat it can spiral.into depression. If you were changing ypur taper by 4 -5 then you should in my opinion see your doctor.As we get older.cataraccts appear in fact i have two just starting but i eill stay.calm it does no good to worry .

[Koalajane]

Carol, I have had cataract ops on both my eyes whilst also having treatment for macular oedema, a retinopathy problem

[CarolF1312 in reply to Koalajane]

That's really useful to know , thanks so much. My proposed surgery was elective lens replacement to correct eyesight but I understand its the same procedure used for cataract surgery.

[PMRpro Ambassador]

I have experience of longterm, relatively high dose pred - and as far as I know, no problems.

The role of pred in increased skin cancer risk was said to be for basal cell and squamous cell carcinoma, i.e. non-melanoma skin cancer but a later study disagreed.

medpagetoday.com/meetingcov....

A more recent review

pubmed.ncbi.nlm.nih.gov/298...

concluded there was no evidence from previous studies that supported the claim. But if a mole has changed - that is possible melanoma usually and there has been no link suggested there.

Like DL - I don't agree with the rheumy and he should have said "possibly" not "likely" and told you to be aware: is it worsening with time or remaining about the same or improving at all? Steroid withdrawal should improve over a few weeks at most. Not enough to manage the PMR inflammation will cause it to get worse. You are only 3 years in - not that long really.

With dexascan results like that, even I would seriously consider a bisphosphonate infusion.

[CarolF1312]

Thanks PMRPro.We can always rely on you for the research studies.

Do you think, it would be better to try oral bisphosphonate before going for infusion?

My fear is once the infusion is done there's no going back if there are side effects. Whereas with weekly oral dose, I can stop if necessary??

Any thoughts on pro/ cons ?

[Longtimer in reply to CarolF1312]

I was in same situation as you with Dexa scan readings.....I do not tolerate medication very well so was a while making my mind up about zolendronic infusion, but opted for it....I haven't had any side effects.......so good luck...

[CarolF1312 in reply to Longtimer]

That's good to know. Very pleased to hear you haven't had any adverse effects. Have you had just one infusion so far?

[Longtimer in reply to CarolF1312]

Yes, 2nd due later this year.....amazed me how quick its done......

[Longtimer in reply to CarolF1312]

Now been rung up for second infusion.....they always say there must be a blood test done for vitD 3 weeks beforehand .....hope my second is as easy as the first..

[bussell]

Just to pick up on one of your points. I have osteoporosis too. Re Zolendronic infusions - after a break from weekly alendronic acid medication, when I went back to it it did not suit me at all, and so it was suggested I should have an annual zolendronic infusion instead. I have now had three spaced over three years with no discernible side effects whatsoever. Next dexascan not due for at least another year and that will hopefully show no further deterioration. I hope it works out satisfactorily for you too. Maybe one less thing to worry about?

[CarolF1312 in reply to bussell]

Thanks so much for your comments. Good to know that some people have no adverse effects. Fingers crossed your next Dexa scan will show the infusion is doing its job

[Supertech]

I have had three infusions with no side affects.

I was on a medication holiday but then developed PMR and today have had to start on weekly alendronic acid tablets. My spine reading in October 2022 was -2.5 but since PMR diagnosis in May have started on 15mg pred tapering down to 10mg at present.

My GP referred me to rheumatologist three weeks ago to get advice about medication but registrar had no idea about AA and said she would have to ask her boss. The GP had not received any feedback last week so started me on weekly AA. The registrar brought up a vey quick taper plan on her computer but I said I would stick with the GP plan which I will adapt to be slower than he suggests.

I have been very impressed with the care from GP, he even phoned me up last week to see how I was getting on.

[Sandradsn]

I had been on pred for 5.5 years. I had slight cataracts at the start of pmr.I've just had an optician check up and no change at all.

[AnniesRyder5]

dear Carol

I agree tapering is hard work and worrying but I can assure that the infusion is not something to add to your woes

I’ve had 3 and the process is totally painless

😊

[annieg1890]

Morning carol, I've been stuck on 2.5 pred for about 2 years now .. whilst it's great to be able to come off pred, I was told this level is nothing to worry about.I have my first acid infusion on Monday, a bit apprehensive but most people have be fine.. I'll be reporting back!

Hope you have a better week x

[CarolF1312 in reply to annieg1890]

Hope all goes well for you. I'm not worried about the process itself. I'm not particularly bothered about needles etc. My concern is purely around any lasting bad reaction to the drug.Please let me know how it goes for you.

[Miacaro45]

I can certainly commiserate with you. My husband always says we have too many parts! Wishing you well.

[Longtimer in reply to Miacaro45]

My son says he glad he’s not female, too many things to go wrong!

[CarolF1312 in reply to Miacaro45]

True ! I'm almost embarrassed to tell my husband when another problem surfaces. Thankfully he's very healthy and also very caring.

[Ana-16]

Hi there. Sorry that things are so difficult for you. I’ve had three Zolondronic infusions with no Ill effects. On the contrary bone scans showed improvement

[CarolF1312 in reply to Ana-16]

That's very encouraging. Thank you x

[Sunnyday365]

I am trying to reduce from 3mg but having issues -wanting desperately to reduce as I also have central serous retinopathy and need shots in my eye to control it. Pred also exacerbates my colitis. I don't get much in the way of medical advice from rheumy or GP about these issues or tapering. This forum is the best. I just recently tried tapering to 2.75 instead of 2.5. in hopes of less pred = less problems.

[CarolF1312 in reply to Sunnyday365]

Sorry to hear you're having problems. May I ask if you had retinopathy before taking Pred ?

[Sunnyday365 in reply to CarolF1312]

I did not and my retina specialist is sure that the prednisone caused it and told me to get off asap (easier said then done). Seems once you have an 'autoimmune' disease others come along. Good luck.

[CarolF1312 in reply to Sunnyday365]

Exactly !

[Karendeena]

I am having numerous problems but put it down to increasing age, I am 66.With regards to the taper I am in exactly the same position as you, moving from 2mg to 1.5mg and like you, experiencing some pain and stiffness but this tends to be on one side and not bilateral. I have also been on steroids the same length of time as you. I await replies to see what others think