Hello folks, feeling a bit out of my depths at the moment. I am now 5 years on prednisolone and, after discovering this wonderful forum was on a very slow tapering, got to 6.5 mgs but a bad cold followed by stressful events and I’m back to 7.5 mgs.
My husband has recently been diagnosed with non-hodgkins lymphoma stage 4 and we feel we are on a bit of a tread-mill moving from one cycle of chemotherapy to the next, with a visit to A&E and an overnight stay when his neutrophils went right down and needed some help. He’s back in A&E today with some bad side-affects from chemo.
In the mean-time, I have had long-term neck and shoulder pain, more recently affecting the nerves in the arm and shoulder and was sent for an MRI scan two weeks ago and awaiting results. I have also been given exercises from a physiotherapist, although I am not sure it is helping much.
Two things:
I took myself off ibandronic acid about two months ago before my husband was diagnosed. I had been 5 years on the stuff. I did have a telephone consultation with a locum before so doing.
I had the first vaccination for shingles two days ago.
My arm still aches from the vaccination and I have really ached around the neck and shoulders and am tiring so easily.
Would the vaccination impact on my already aching neck and shoulders? And was I wise to take myself off ibandronic acid? Would these bad aches and pains be down to taking myself off ibandronic acid? I wasn’t given a dexa scan when first prescribed them 5 years ago and when I did get a scan earlier this year I had osteopenia, not uncommon at my age, but perhaps the ibandronic acid was maintaining it at this level!
Moreover, I find if anyone is kind towards me i end up close to tears…very emotional and anxious at the moment.
I realise that it would be ill-advised to try to start very slow taper while this is all kicking off, but I wonder if I was wise to come off the ibandronic acid.
Feedback would be so much appreciated.
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allofaquandry
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I can't really speak to the effect of stopping the ibandronic acid - but after 5 years I think a drug holiday will be a good thing and is in line with recommendations. What are your t-scores from the dexascan?
To the rest - so sorry to hear about your husband and believe me, THAT is enough to account for all the rest. I went round in a daze with cottonwool brain for weeks after my husband's first cancer diagnosis and I flared after the second - although to be fair, I didn't flare that much because I upped the pred to deal with it! There is no wonder you feel as you do and the shingles jab will have added a bit, I know a few people have felt fairly rubbish for a few days though it does seem to vary.
Your neck and shoulders could well be tension - and since it is really important you look after you as well as your husband I think you should indulge yourself with a few nice massages, Something warm to lay round your shoulders will probably help a lot too - a heated poncho or wrap, something not too heavy. I discovered the joys of a heated car seat while visiting my daughter last week and that has prompted me to use mine in my new car! And it really helps a PMR-ravaged back!
How much help have you got? Take ALL offers made, whether you think you need them or not. What sort of treatment plan does your husband have? It is hard for both of you, especially dealing with the adverse effects. Do yourself a favour: if he is off food because of the chemo, don't go out of your way to make his favourite foods to tempt his appetite. It sounds harsh, but all that will happen is that he refuses them later once he is past the chemo because at present they won't taste right. All the things we had eaten as a family (my girls were barely out of primary school) and he ate during chemo was rejected afterwards and I ended up cooking at least 2 meals for the rest of his life there was so little left we would all eat. He went back to the food he'd eaten as a teenager at home - my 2 grew up in Germany, pies and the like his mother had made in the 1960s were total unknowns to them and they weren't impressed!
Thank you PMRpro for responding so quickly. I'm already feeling less anxious. I like your 'drug holiday'. I don't know what my t-scores from the dexascan are, my medical record on the surgery online link just says minor osteopenia, which sounds quite promising, but I'll ask the surgery.
Your feedback, experiences and advice all welcome. The idea of a head and shoulder massage really appeals, much more so than physiotherapy exercises! I do try to do pilates at least 3 times a week and to do a few strengthening exercises but I have been skipping these of late.
There is just my husband and I to prepare food for in our days so I don't have the difficulties you had, it must have been exhausting cooking for several with different tastes. He's on 6x 21 day cycles of R-CHOP and will get a scan after the third cycle to see if it is working so fingers crossed. It is just such a bummer when this polymyalgia stuff gets in the way when I need to be in support mode. But we'll get there and it is just so helpful to have this group to turn to. Thank you.
if it is like Alendronic Acid then you do well to stop it. My mother is now 101 years old but in the day she was given Alendronic Acid for osteoporosis. However, despite the recommendation that you should not take it for longer than five years without a break (my mother didn’t know this) the doctor continued prescribing it. My Mum had a very severe stress fracture (no fall) her femur was very painful and then it just gave way and x-Ray showed the stress fracture which required surgery and had to have pins and plates. The Hospital confirmed it was caused by the Alendronic Acid. After a period of time these medications do the reverse of what they are intended to do and cause bone to deteriorate, The doctor’s practice were very apologetic but that didn’t help my Mum with three month's of recovery whilst in her late 80’s.
Your mum's experience is shocking! It is only through this group that I started to examine side effects of this drug and felt enough is enough. There should be a little handbook that comes with all of this!
Yes, apparently a lot of legal cases in the USA under similar circumstances - for stress fractures - but Mum decided not to sue as she thought at her age it was prudent to have a good relationship with her doctor’s practice.
Mum knew nothing till after the event when she looked it up. Never mentioned to her previously and she had been on Alendronic Acid for about 15 years!!!!!
The Hospital confirmed it was caused by the Alendronic Acid. Wow, the hospital confirmed. This might be an uncommon admission. I'm beginning to wonder if osteopenia is too often treated unnecessarily. As consumers, we do need to be wary.
Osteopenia is not a pathological condition so doesn't require treatment. All it means is that your bone density is lower than it was when you were 30 or so. Even osteoporosis is a purely arbitrary figure - and most people who break a bone have normal bone density!
So sorry for all the stress and anxiety you and your husband are going through. It is so much to digest and deal with. Of course it will make your physical condition feel worse in every respect.
I believe I am right in saying that it is not recommended that we stay on Ibandronic Acid for longer than 5 years, if it is similar to Alendronic Acid. A medicine that protects the bones from the adverse effects of Prednisalone. Well done for staying the course. I hear that they are not easy drugs.
We are recommended to have the non live shingles jab, so you’ve got that dealt with. I doubt it will make your neck and shoulder pain worse. I hope the MRI results are just fine. Your aches and pains are more likely to be PMR related. I wouldn’t dream of tapering with all you have going on. You are maybe on the edge of a flare. Have a look at the guidance for dealing with a flare accessed on this page, in FAQs. Maybe an extra 5 for a week to 10 days would kick it into the long grass, then back to your original dose without needing to taper? Osteopenia is common at our age, so step up the weight bearing exercise and the calcium and vit K2 and vit D in your diet and supplements if the calcium agrees with you.
I am trying not to be kind to you and make you cry. However, crying is a pretty good stress reliever and you have too much of that. Wishing you and your husband a very good outcome from your trials and tribulations. 🌺
Thankyou SheffieldJane, for your good wishes and thoughts. Always wary about upping my Pred, I feel long term I'm getting nowhere, However your suggestion re a flare and a short term boost of an extra 5 might well help.
Don't be wary of upping the pred - especially in the circumstances. There is no point BOTH of you feeling ill if a bit more pred makes YOU feel better able to do what you must do. Otherwise you run the risk of a flare and needing even MORE pred to get it under control - it isn't worth it.
I am so sorry to hear about your husband. That us such a stressful situation for you both.
This is what is recommended regarding bisphosphonates “Mild risk of fracture: treat with bisphosphonate for 3–5 years, then stop. The ‘drug holiday’ can be continued until there is significant loss of BMD (i.e. more than the least significant change as determined by the testing center) or the patient has a fracture, whichever comes first. “ So it looks like you have done the right thing.
so sorry to hear about your husband - and as PMRpro says that’s enough to a. make you feel rubbish [with or without PMR] and it’s also very likely to cause a flare.
The vaccine may well be affecting your neck and shoulders [and making you feel under the weather] have you taken paracetamol to see if that helps a little…or as again suggested caused by tension.. and no wonder really.
Don’t beat yourself up about the ibandronic acid - probably due for a holiday from that - and it’s still in your system.
Adrenals struggling as well are no doubt adding to how you are feeling.
Certainly no tapering, in fact you might find a couple of extra mg helps you through this very trying time….and to be honest there are a lot more important things that need your attention at the moment.
Agree with PMRpro [we’ve both been through similar experiences] take all the help you can get.
Although we always bang on about cooking from scratch - that has to go out of the window sometimes as I found out with my OH. When he wanted something to eat he wanted it within 5 mins - if I cooked something, and it took 30mins invariably he’d lost interest by the time it was ready. I ended up wasting food, so I stocked up with M&S or Waitrose ready meals that could be on the plate asap. .. much less stressful.
Thankyou so much. I know this sounds daft, but I didn't think of taking Paracetamol. I have taken codeine a couple of nights to help get me so I can get some sleep but avoid it as much as possible because of the constipation problem it brings about. Will give paracetamol a go as I could take that during the day too. if no good I'll try going up on Pred for a short term boost.
The suggestion of stocking up on M&S or Waitrose really appeals. Just discovered Pieminster pies and they also do gluten free so becoming a big fan of ready prepared meals.
Was told by a practice nurse many moons ago to take paracetamol after any vaccine….…and just keep your eye on things to make sure you don’t flare.. but an extra mg or two won’t do you any harm to tide you over…
so sorry to hear of your worries and your husband’s illness.
I had my Shingrix jabs a few months ago and I felt shivery and achey all over after both of them. Fortunately for me it only lasted for that day and the day after.
Just a quick note on shingrix...I had the first jab a month ago...and it made me feel very fluey for a couple of days. The second jab is 2-6 months later and I have been told can cause more side effects. I always take a couple of paracetomol before a jab (and after if needed). I was also advised to do regular arm movements to disperse the vaccine. ( raising arms, rotating etc...a few of times every hour for the first few hours after jab). Also keep well hydrated.
Hoping you feel better and that your poor husband speedily improves
The bit about doing regular arm movements after a vaccination brought back childhood memories. I remember my grandma taking my sister and me for vaccinations and making us take our skipping ropes with us then making us skip all the way home after the jabs 🤣
Hello allofaquandry. I thought I’d send you a note as we seem to be traveling the same road.
My husband was diagnosed with COPD three months ago and it’s taken a while to realise that our situation is, and will continue changing almost daily, which makes it hard to plan or prepare. Accepting that was a great milestone - we just have to go with the flow, at least on the surface….
As PMRpro has said, meals are not what they were; favourite food has gone out the window; quantities are tiny and I’ve given up suggesting what I think he would like. It’s better (for both of us) if I ask him to tell me and he usually knows what it is - even if it’s just one hard boiled egg or half a sausage and 6 chips.
I’ve been very conscious of my own well being and avoiding a flare so at least preparing 2 meals is an opportunity for me to eat what I need too.
Re massages, I’ve been so fortunate to have seen a very understanding therapist since I was first diagnosed with PMR 6 years ago but he moved away in August and I have missed having my treatments.
On top of the usual PMR pains, like you I also developed the stiff neck and shoulders - definitely tension! After asking around, on Friday I saw a new therapist who totally understood the balance between helping with gentle pain relief and avoiding any strong manipulation or deep tissue massage that could provoke a flare. ‘Regular physiotherapy’ is definitely not good for an auto inflammatory condition, in my opinion.
I felt great yesterday and this morning so I will see her regularly now. Neck pain gone! Make sure you find someone who understands PMR and I’m sure you’ll feel the benefit too. Just taking that hour out in a calm environment was so good.
I wish you and your husband well on your journey. Look after yourself (which is what everyone is telling me). We can only wear our Superwoman pants for so long and help is there when we need it.
Thankyou Nippersmum for your reply. It is indeed, even more so than before a 'go with the flow' situation, not knowing what the next day will hold. My husband is someone who works to deadlines and sets himself targets so you can imagine how deeply frustrated he gets when he is unable to meet those targets. He is now on a prednisolone high (he gets 5 days of 100mgs so you can imagine what that does!). It is a bit of a roller coaster.
Your comment ' ‘Regular physiotherapy’ is definitely not good for an auto inflammatory condition, in my opinion' I'm agreeing with. When your already hurting and struggling I think the last thing you need is to do exercises that seem to contribute to more hurt, later perhaps when over this.
After taking Paracetamol and then, last night codeine I have upped my prednisolone to 10mgs for a few days to help me out of this and I'm now on the lookout for a decent neck and shoulders massage.
Everyone's supportive comments have been so helpful here. what a shame we are not given info re PMRGCAUK when initially diagnosed.
Thankyou again, and wishing you well, you are doing great!
Hehe - yes, know all about half a sausage and 6 chips ... Though it makes me wonder - he didn't have COPD as such but awful lung problems after one was removed. Did that also contribute to his lack of appetite?
I’m sorry you’re having such a bad time and I can’t add much to anything that’s been said. I had a flare after covid booster recently and after taking advice here, upped from 5mg to 10mg. The difference was amazing and made me realise the inflammation had been building up and wouldn’t have improved. I took 10mg for 8 days then dropped back to 5mg a couple of days ago and so far, all is reasonably good. In your circumstances, I think you need the extra pred. and it should knock your flare before it takes hold. Very best wishes to you both.
"Should knock your flare before it takes hold." That advice always bears repeating. The pro's have taught us well. It's good to hear your method has worked out well!
Oh my. You're under so much stress. I wouldn't taper, but rather increase the Pred for a bit. You don't want to flare.
As for the IA. I was unable to take alendronic acid. The Zolendronic acid infusion was recommended and I had that in October. Last year's dexa revealed osteopenia, but the rheumy said she said osteoporosis This year's had not changed much. Long story of her neglectfulness. So I developed osteoporosis after being on Pred for only a year and a half. Was the infusion too late? She was aware I could not take AA since the first dexa. Maybe it will keep my bones from getting worse? The possible side effects of the infusion are rare, but scary.
I now have 8 vertebral fractures at last count, and waiting for an MRI on Dec. 19th to determine which are the next ones for vertebroplasties.
Ultimately the choice is yours about the IA, but I'm just wondering if it would be good to give it a rest for longer. The massages sound wonderful. Positive vibes for your husband - and you.
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