Have been off pred for3 months but have suspected things are not right for the past month. Eventually so not right that I could hardly get out of bed last week. Went to see my GP and had a blood test. CRP 48 and ESR 60. GP has prescribed 20mg pred and a blood t est towards the end of next week. She mentioned bone health and I said my bone scan was normal last year. She says the uk guidelines are that I must have something for bone health whether or not my Dex scan is normal. I told her that AA g ave me a very upset stomach so sh e says she will arrange an infusion. My question is, is 20mg not a bit excessive? Also why do I still need a bisphosphonate? I’m pretty fed up. It was a 4 year long struggle to get off pred with all my stomach problems too and here I am back at the very beginning. Best wishes to all.
Liz.
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polymy
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What a shame, but I would say your PMR never went away completely, and after stopping Pred it’s taken 3 months of untreated inflammation to cause problems again. You say it was a four year struggle- that says to me it’s been there all along.
Yes 20mg is slightly high, but GP is hoping to get things under control quickly I guess. You may find the infusion okay, unfortunately you won’t know until you try, but my understanding is the affects of AA stay in your body anyway so if you’ve taken it in the last, more is not necessary.
Guidelines actually say -
“When initiating steroids for PMR to prevent the complications of osteoporosis (A).
. Individuals with high fracture risk, e.g. aged over 65 years or prior fragility fracture
Bisphosphonate with calcium and vitamin D supplementation
DEXA not required
. Other individuals
Calcium and vitamin D supplementation when
starting steroid therapy.
DEXA scan recommended
A bone-sparing agent may be indicated if T-score
Hi polymy, I'm 5.5 years into my PMR journey. (Psssst.. In the past few months, I have started to feel better. Sometimes I forget I still take prednisone, now 3 mg. Daily.)
I know about the irresistible desire to " get off prednisone", and the mad scramble to start tapering prednisone almost immediately after diagnosis.
Here are the lessons I have learned.....
, ...PMR will extinguish in its own time...we cannot hurry its demise, nor can we deny its presence when we are suffering.
After repeadedly struggling with the taper issue...and initiating the need to return to higher level of prednisone at least 5 times...I finally got the message. ....Shut up, sit down, and play the game, according to PMR's rules.
In the end...PMR will extinguish itself...you will be yourself again...
I’m so sorry to hear that your PMR has reared its ugly head again. Sadly, as DorsetLady says in her reply it probably hadn’t actually gone away.
I can understand you feel very fed up after four years of trying to get the illness under control. I hope your GP manages to get things sorted out for you quickly. Best wishes to you for better days to come...
I was unable to take AA and was told to have an infusion this was Zoldronic acid instead. It is stronger than AA and seems to cause panic amoung dentists. If you do decide to have an infusion get your teeth checked first. Most dentists will not undertake intrusive treatments if you have had ZA. I had one infusion 18 months ago my teeth were OK then, I now need to have a tooth out and my dentist insists I have it done at the local hospital. There is a greater chance of infection and developing osteonecrosis. ZA also remains in the body for years. From what I understand it is considered overkill when protecting bones from steroid damage.
Thanks for that. It is quite disturbing to hear. My dentist wouldn’t even do a filling when I was on 5mg pred. She said the injection might cause a bleed.
I think that's a bit extreme mine is OK with fillings and I've had injections but I always have had one without adrenaline. Don't know if this makes a difference.
Your dentist is as bad as your doctor - where did you find them!!!! That is also rubbish. I had an extraction while on about 10mg pred. AND I am on anticoagulant therapy!!! Injections, no problem. Extraction of a wisdom tooth - no problem.
I have known my dentist for 15 yrs. I argued quite forcefully with him and he agreed to talk to afellow dentist who specialised in med side effects and ring me back. They had decided it wasn't worth the risk. I'm not sure what they expected to happen at the time of extraction, I would have thought any infection would develope later and the hospital could be involved then if necessary.
In this area dentists are not easy to find we don't get much choice.
Hi polymy. Really surprised to hear about your dentists panic. I had a tooth out a few months ago and was on 71/2mg. No concern about injection or removal of tooth. I didn’t bleed much. I had gauze to bite down on when I left and then faced a 2 hour journey back on two buses. Got in, took out gauze and no bleeding. I was relieved and it healed over quite quickly too. Take care cc 🤗
Since your bone scan was clear, I would skip the biophosphate and take calcium and D3. Make sure you have a solid meal in your stomach when you take your dose and you'll suffer a lot less. I found splitting my dose in half about an hours before bed and half after waking really helped me until I got under 10. And I took the doses with meals and a lot of water. Since then, I take it after dinner and with desert (around 10PM) so there's plenty in my stomach. And I still wash it down with a lot of water.
Hmmmm! I don’t think I will be on 20mg any longer than a week if my levels go down. Unfortunately I am not a big eater as have only small meals 4 times a day.
I'm not a medic, which I should have said in my original post, but when I was struggling with 20mg and an upset stomach, splitting my dose and taking it with food helped. A lot.
That is co$$£ers if you'll excuse the term - unless you are over 65 or have had a fracture!
Try 15mg and see if it works first - if it does that's good, you are already 5mg down on your taper. In fact, I would try 10mg first. I imagine you may well be able to reduce relatively easily down to under 10mg - low doses of pred were keeping you OK before you stopped, so a fairly low dose may still be enough.
(6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A−).
Individuals with high fracture risk, e.g. aged ⩾65 years or prior fragility fracture
Bisphosphonate with calcium and vitamin D supplementation
DEXA not required
Other individuals
Calcium and vitamin D supplementation when starting steroid therapy.
DEXA scan recommended
A bone-sparing agent may be indicated if T-score is −1.5 or lower.
Individuals requiring higher initial steroid dose
Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)
I have been on pred for over 9 years, at well over 7 years with a cumulative dose of well over 10g my bone density was still hardly changed from the start and still a normal reading. Loss of bone density is not inevitable.
thank you PMRpro. I will try 15mg as I feel 20 is overkill. It would appear nonsense to say I still need a bisphosphonate. I will argue that with her. I am well over 65 but have never had a fracture. My doctor only rang at lunchtime with the results and the instructions. I had the blood test yesterday. I could hardly get out of bed this morning and had some steroids in reserve. I took 10mg in desperation. It has improved things but only by about 50%. I think 15 will hit it on the head tomorrow. I have quite a few what are blithely termed comorbidities. As for the dentist, she is so over cautious. She refused the injection for the filling when I had in fact had a pacemaker fitted whilst on 17.5mg pred. Also had a tooth implant at a private clinic on the same dose. I don’t know what she was thinking about. Thank you for your help. Liz.
To work out your own fracture risk and to work out whether you might need bone protection medication, take a look at this FRAX website and use their calculation tool. The link to their calculation tool is at the top of their page: sheffield.ac.uk/FRAX/
• in reply to
If you don't know your femoral neck BMD (from DEXA scan), then just leave question 12 blank and simply answer all of the other questions.
With the UK version of the FRAX calculator tool, there is a handy little comparison tool, and you use it like this:
Step1: answer the first 11 questions, as honestly as you can, then click on “Calculate”
Step2: your numbers appear (fracture probabilities), then click on “View NOGG Guidance”
Step3: look at the coloured curve that appears and interpret it as follows:
(a) If your probability for major osteoporotic fracture falls in the RED zone, you should strongly consider taking medication to prevent bone-loss.
(b) If your probability falls in the GREEN zone, then there is no great rush to take medication to prevent bone-loss, but do continue to concentrate on good diet, weight-bearing exercise and prevention of falls, plus taking calcium and vitamin-D will help.
(c) If your probability falls in the YELLOW zone, things are not so clear-cut and you need to go and get a DEXA scan. With the result of the DEXA scan, your doctor can then answer all 12 questions on the FRAX questionnaire and so make an even better assessment of your fracture risk.
FRAX looks to be just a general guide, sort of like a “rule of thumb”. I only tried the UK version; I don't know what the versions for other countries are like.
That is really rotten that you have this back again. I can only imagine how frustrated you are at the moment. I keep telling myself that "No storm lasts forever." In your case you got to see the end of the tunnel even if for a short time. Hopefully you will get thru this rough patch quickly.
Just because the NICE guidelines instruct the doctors to prescibe "bone protectors" which don't actually do the job, it doesn't actually mean you have to take them! I didn't accept the Alendronic Acid and calcium carbonate from the practice pharmacist - I just handed them back with a smile and said I wasn't interested in taking them so I wouldn't waste public money by pretending I was. The GP seems still to think that I am taking them as they appeared on my notes when I was in hospital recently and I had to put them right about it. Personally I wouldn't axcept the infusion either, but that is your choice. Much better to ensure magnesium levels are kept up together with vitamins D3 and K2.
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Where do I go from here?
Here we go again …
Reducing my meds again
Dexascan results
