Hi, thank you to everyone on this forum, I find it incredibly helpful reading everyone's issues and answers.
I have just had my phone call with the consultant and told her how reducing the prednisolone has brought back some symptoms, mainly stabbing in temples and back of head neck, headache, neck pain down to clavicle and back/shoulder pain.
She said that my bloods were completely normal. ESR 25 and CRP 1 and so was not expecting me to tell her this. I was originally on 40mg for 4 weeks, reduced to 30mg for 2 weeks, and this is my second week of 25mg.
She suggested I go back up to 40mg and she will ring me next week. She discussed Tocilizumab as an option if the prednisolone is not cutting it and told me to look it up. I don't think I know what the side effects are of that, but the most depressing news was my DEXA scan results. The last results I could find were from 2012 were my T-Score for Spine were -2.9 and are now -3.9, Femoral Neck was -1.9 and now -2.6, Total Hip was -2.1 and now -2.8.
Apparently I have always had some kind of low grade parathyroid issue which has never been dealt with or looked into. I am now wondering if that could be a factor. I do have a phone consultation next Thursday with Endocrinology, this would be my first one and so now am at a loss as to what to say.
Feeling pretty deflated about both to be honest. Back up to 40mg and bones crumbling around me.
Sorry to moan, but this is the only place I feel I can go onto who actually would understand.
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Sophiestree
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I am glad your consultant had the sense to put you back on 40mg, so many just say carry on as you are. Tocilizumab is supposed to be great for Covid too. There is quite a lot about it on this forum as several people take it. I am sorry your Dexascan is not so good. The steroids do affect our bone density in some cases, but also ageing does not help! Have you been given anything for your bones such as Alendronic Acid. You should be taking vitamin D and calcium too.
Yes. I was surprised she said to put it back up as she said all the blood results were now all normal and was not expecting me to tell her I had symptoms back.
I'll have a search re Tocilizumab. I don't know if the side effects are the same, worse, better? I don't sleep on pred that's for sure and I hate the thumping heart and shakiness.
Re osteoporosis, I had a zalendronic acid I/V at the start of taking the prednisolone in October.
I was in the process of talking about medication for osteoporosis a few years ago but because I had a DVT when I was a teenager, it restricted what I could have and I had had really awful side effects from taking tablet form Alendronic Acid. The problem was that my husband suddenly became really ill and went into hospital and died 4 weeks later.... he was working the month before, so I think I spent a fair few years in a total daze, then had a first grandchild, then my daughter moved to Hong Kong, etc etc with Covid in the middle, so my bones were not at the forefront of my mind, and if you're not on it with your own health the GPS won't be. Hence my parathyroid issues that have never been addressed.
I walk everywhere, have a dog, and am reasonably active, although admit I've never been a gym bunny!
Oh really? I was rather surprised when they causally mentioned that my Calcium was high 6 years ago... I have no idea why they didn't take that further. I will see what the Endocrinologist says next week as it's only a call so not much will happen then.
Yes, the endocrinologist is the person to ask. I understand that once diagnosed the treatment is straightforward and very low risk. endocrinesurgery.ucsf.edu/c... the bone forums I have often seen posts or replies from people who have been treated for parathyroidism and seen positive results regarding their bone density afterwards. Btw parathyroids are nothing to do with thyroid - just location: these glands are situated next to the thyroid.
It sounds as if you are being looked after well. I am so sorry about your husband and all the other problems you have not to mention Covid on top of everything else. I think Covid is getting to all of us.
Moan away - it is what we are here for and if we don't want to listen we can do the other thing without being hurtful and yes, we certainly do understand. It's hard when you get all these whammies all at the same time.
If they have thought you have minor parathyroid issues and with a dexascan like that in 2013 - I really would want to know why they haven't investigated before.
I am a bit confused though - that is a very (ridiculously) fast reduction for a patient with GCA who was only started on 40mg in the first place. It doesn't surprise me you have a return of symptoms after only a few months and a more sensible approach would probably have avoided it. BUT, you are in the UK, the guidelines for approval of tocilizumab are very strict and I seriously doubt your history thus far would qualify - as far as I know, it is still only available for a limited time and for patients with a history of difficult to manage relapsing disease.
Interesting re if I would qualify for Tocilizumab, I wondered if she also suggested it because of the bones. Will be interesting to hear what she says next week.
I seem to have a permanent eye infection, treated it twice now, but feel I have a film over my eyes that can make my sight blurry. But not all the time.
Have you had your eyes checked recently by an eye doctor? Someone qualified to check for any signs of GCA? I know tocilizumab is supposed to control and maybe even cure GCA, but it's as well to be closely monitored if you aren't already by an eye specialist as well as rheumatologist. And as the others have said for GCA (even PMR without GCA symptoms) your highest dose should have been maintained longer. In the end a slower taper usually results in a lower lifetime intake of pred as flares and dose increases are avoided. I don't have parathyroid issues, but you may still find some useful tips in this: healthunlocked.com/pmrgcauk...
I saw the emergency eye clinic on my first day off the steroid one gram drip as it would affect what dosage i took. He said he couldn't see any pressure, so was put on 40mg rather than 60mg.
I may say to her next week to maybe reduce it slower. How long do you think I should have been on 40mg before reducing? I'm guessing she reduced it due to the ESR and CRP being back to normal.
I stand to be corrected, but I don't think elevated pressure is a GCA symptom. They look for signs of inflammation in the optic nerve, or something, and this requires specialized know-how. But as PMRpro says, your symptoms are similar to common pred side effect so probably more annoying than something to worry about. healthline.com/health/giant... do need to have the pressure checked while on pred, however, because elevated optic pressure is a pred side effect so it's good yours is okay. I experienced this, although not seriously enough to be treated for pred-induced glaucoma, and my pressure dropped back to normal as my dose was decreased. My ophthalmologist spent a lot of time during my visit after starting pred for PMR peering with lights into the back of my eyes, meanwhile giving me a lot more info about pred and GCA than my family doctor had done!
I think I'm going to make an appt with the optician and see what they say. I had a fair amount of pressure behind my eyes pre diagnosis but not since starting the medication. Thank you for the info. You really have to be on your game with everything don't you... it's a full time job!
That is the sort of feeling I get with dry eye - common in PMR and with pred. You could try either artifical tears or a liposomal spray such as Optrex Actimist (other brands are available) which you spray on your closed eyes and it seeps down to soothe the surface of the eye.
There are other medications besides AA but if it is a parathyroid problem, it is that that must be sorted, all the bisphosphonates in the world won't help. In the meantime, lots of things to do to make it less significant: remove trip hazards, improve lighting in dark places and wear proper shoes rather than sloppy slippers in the house. If your balance is a bit dodgy do exercises to improve it, make sure you keep muscle tone good and drink plenty of water to keep hydrated. Get your vit D checked and put it right if it is low - don't know why but low vit D has been found to be associated with increased fall risk.
I don't know if any of those mention medications - an essential part of preventing falls when doctors are do keen on dishing out pills for every ill - not to mention the ills of the pills
In the UK you may qualify for a referral to the falls clinic if that is still functioning so worth asking about it. They provide advice to make your environment safer.
I decided recently that if I end up living alone, one of the first purchases will be one of those wearable monitors like this
I reread your post/replies (Nanna Duty Today) & see you’ve had a Zolendronic Infusion, that is much easier than the weekly AA, l’ve done both so know it’s preferable!
I’m very sorry about your husband, that is so very sad.
Yes. I was worried about any side effects with the infusion but it was ok, a couple of days feeling a bit flu like but was good after that. I'm guessing i will have that next year as well. It has stopped my plans for my teeth though !! Urgh it's never ending.
Thank you very much for the reply. I think with so the counselling over the years I'm in a much better place.
It is a worrying time for you - a rock and a hard place. I might be inclined to look seriously at the Tocilizumab in view of your Dexa Scan result. It will enable you to get your Pred dose down much more quickly and therefore spare your bones.Of course your bloods won’t show the inflammation when you are on these doses of Pred. I am not a doctor, but even I know that.
I am on Tocilizumab and I got down from 40 mgs to 10 mgs of Pred quickly without any bother. It is preferable to yoyoing your Pred dose which the body hates.
I'm so depressed about the dexa, urgh, nothing much I can do though, and need to get it out of my head, as just another thing to stop me sleeping. I have been laughing to myself though at how she said it was really bad!I also feel let down by the surgery for ignoring the parathyroid issues, and am going to write to them and ask why that happened.
So if you go on Tocilizumab you also have Pred tailing off? How long does that take? She said I could only have it for a year, if indeed as DorsetLady says, I get it at all.
I will be interested to hear what she says next Friday, and yes, you make perfect sense re why my bloods look fine.
Regarding the Tocilizumab, I was taking Leflunomide and Pred. as Pred. didn't work on it's own. It helped, but when I got from where I started to about 4mgs. I didn't feel right so my Rheum. applied for the Tocil. and I started injecting in late Jan. this year. I am now down to 1mg. of Pred. I received three months supply this week, I understand the supply will go on till April now. The only side effects I have noticed are slight cold symptoms, sometimes breathlessness, and sleepiness during the day, otherwise, fingers crossed, all goes o.k.
Bone health can be improved - Calcium, vit D, vit K2, Magnesium. Good diet, weight bearing exercise. Don’t give up. The internet is full of good guidance. Depression stems from feeling helpless, you are not!!Tocilizumab has strict criteria before it is prescribed. I expect your bone health would be a factor. I don’t know what happens when the year of Tocilizumab runs out. GCA tends to last longer than that. Hopefully it means that overall you have had less steroid, which is a positive. It took me a matter of weeks to reduce from 40 mgs to 10 mgs of Pred quite easily. I seem to be getting headaches when I attempt to get below 10 mgs. Not very bad ones. It may be fear for my eyesight that’s holding me back. There is a lot of educated guesswork in managing this.
I am not sure about the long term impact of your parathyroid issue. I had Thyrotoxicosis from Graves’ disease in the 80’s. Nobody has drawn a link. I am on Levothyroxine for life, after radio-iodine treatment ( knocks out thyroid function). It is another autoimmune disease.
Depends on what the parathyroid problem is but it CAN be the reason for osteoporosis with excessive loss of bone density. Only sorting it will sort the low bone density - irrespective of how much you exercise and what you eat.
I'm not giving up although feel deflated when I've been trying to do all the right things, but need to be realistic i guess.I have been on Levothyroxine for 40 years... runs in my family.
Back on 40mg today and feel I have more symptoms! But hopefully will sort itself soon.
Sorry to repeat advice you’ve had already Sophiestree. I forgot to look at your existing replies.I am sorry for the loss of your husband and am so glad that you felt/ feel supported by counselling. 🌸 Stick with us, this forum has been a Godsend to me. I learn something everyday.
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