So I had a face to appointment with my GP today. I’ve been on 600mg a day of Pregablin and 40mg of Amitripyline for PHN (post herpetic neuralgia). I tried reducing the Amitripyline to 30mg a day but the PHN flared quite quickly so I went back up to 40mg. I left it a few weeks and after a telephone conversation with a doctor I reduced the Pregablin to 450mg a day. The same thing happened and the PHN flared. I’ve tried to tough it out but after talking to my GP today we agreed I should return to the 600mg. The reason I tried reducing is because of the side effects, painful and swollen hands, dizziness, weight gain, all on the stomach, and fatigue.
Of course all this is in addition to wanting to reduce my steroid intake. I’m currently on 11mg but still have pain in both hips and shoulders. I’ve tried a number of times to get below this and it always bites me needing me to up the steroids again. I’ve tried several different methods to reduce the steroids over the last 8 years without success. I now have very thin skin and bruise so easily and have been getting bruises around my neck and top of my chest without any reason I can think of.
My GP has told me to get blood tests done for a full work, up which I’m pleased about. My last CPR result was 23 and that was 2 months ago.
I have another appointment my GP in a couple of weeks to discuss the results of the blood tests. She also asked me if I wanted to see another rheumatologist as the one I had been seeing discharged me back to her. I didn’t get on well with the rheumatologist I was seeing and he basically said there was nothing else we could do. Fair enough as I’ve tried numerous steroid sparing drugs. My issue now is it will be at least a year to get to seenanother one or pay to go private. My first reaction is why pay to have someone else tell me there is nothing they can do🤷♂️.
Sorry for the long post but it helps to get it off my chest and share with this community. It’s all a bit depressing!
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Griggser
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I’m sorry you’re having such a difficult time. The good thing is, your GP does sound on the ball and helpful, which is a definite plus.
Did the GP suggest anything a rheumatologist may be able to do that the GP can’t? I’m increasingly of the opinion that if you need a specialist, it’s worth, if you can, paying to see them quickly, then you know where you are with things. I’m sorry, I don’t know about PHN so can’t comment on that specifically.
I’m sure someone with more knowledge will be along soon.
It’s always good to get these things off your chest, I think.
My GP say there was anything else the rheumatologist might be able to offer. I did say that I hadn’t been offered Tocilizumab and wasn’t even sure if that helps with PMR.
I had a terrible case of shingles a few months ago and I had pain for over three weeks. I tried lyrica and gabapentin but I felt so terrible- depressed and dope - .and it didn’t help at al. What helped me the most was a topical salicylate cream here is called Blue Emu complete It has a salicylate which goes through the skin and that seem to help me the most. I had so much pain I went to the hospital; I didn’t know it was shingles at first because the rash had not yet come out. It hurt me to breathe and I’m on oxygen. I was screaming in pain. Ice pacs also helped. Lidocaine paatch maybe a little. I'm good now but what a nightmare.
Hi it sounds like you had a terrible time but I’m glad you managed to find some relief. My shingles was in my right eye, I’m still suffering a bit in my eye and have nerve damage around my eye, forehead and down one side of my nose. I used lidocain patches but they only gave slight relief. I also have tried various cream and lotions as well as painkillers but nothing really took all the pain away. I’m back on 600mg of Pregablin and 40mg of Amitripyline along with the 11mg of prednisolone & zapain as needed.
Sorry to hear your troubles, and yes agree why should you have to pay, but you might get one that is more interested and maybe willing to help more, and one thing is for sure you’ll see one quicker if you go privately.
Hi, yes I agree with what you’re saying but I was seeing a rheumatologist privately for about 6 years until he and I both retired. I have seen the latest one on the NHS 3 times and two of his registrars. So no new ideas came forward which is why I’m hesitant to pay privately.
Hi GriggserSorry to hear your problems with both PMR and Shingles.
I'm sure you have it in your country the SHINGLES SHOT.
Our neighbor came down with shingles in his throat so was hospitalized then got covid. He was told he could get his shot after 1 yr but got shingles again so their now saying he can get his vaccine for shingles after 6 mos.
Hmm good for thought indeed. Once you get to 70 in the UK you’re offered the shingles jab. I’m not sure if I can get it but will talk about it when I see my doctor to discuss results of all the blood tests she has ordered.
Is it ALL directly PMR? Is anything possibly myofascial pain syndrome? It responds better to targeted things - I have had horrendous greater trochanteric pain syndrome for the last 4 months so I do know where you are coming from.
Is it DEFINITELY "only" PMR? No chance that some form of inflammatory arthritis is creeping in there?
That really is about it isn't it. I know how you feel - after 18 years of PMR I have been stuck with nearly 20mg to be able to function even halfway decently for the last 6 months. My rheumy here in Italy is now trying TCZ. Because he can.
But quite a bit of the last 4 months probably isn't directly PMR
I had a Stellate Ganglion Block: A stellate ganglion block involves an injection of local anaesthetic into the collection of nerves in the lower end of the neck.
Oh goodness Griggser, I can’t believe all that you have been through and are still going through without very much relief it seems. As you say, probably is a good thing to offload on here. It seems that you certainly recently, haven’t had very much useful support from any of the rheumatologists here. I must say, too, I am pretty disillusioned about the one I have been seeing. She wanted me off steroids by this March so that then she could see what was really going on! She has never believed I have PMR although our lovely retired GP was so incredibly supportive. She has mumbled about Fibromyalgia but said nothing more. Well, there has been no way I can get down to zero and I haven’t and don’t want to see her again! No point! I felt quite a bit better earlier in the year and got down to 7 mgs but recently have and still have two flares so am back up to 10 mgs. Feeling the awful fatigue, etc etc….. won’t bore you with any more. I consider myself very lucky that when I got shingles about 18 months ago, it was horrendous and I and the doctors at A and E thought I had kidney stones, anyway, it was around my torso so, like I say, I was very lucky it was there and haven’t had to endure all that you have.
So, a bit like you, am plodding on with the new lady GP, bloods just taken so will see what the results will be. She got me onto a new physical physio thing they have set up but I have had to cancel it. Can’t even manage a 10 minute walk since this latest flare.
It’s all so frustrating and debilitating isn’t it? For me this has been going on for around 10 years being on steroids for almost 7. Also now diabetic, and lots of other extra nice things to go with it all.
Anyway, I really wanted to send my sympathy to you and just wish things woul d drastically improve for you.
Do let us know how you get on and if you manage to find any other help for everything that is going on with you.
Hi Liz, thanks for taking the time to reply. It seems that you have had enough to contend with as well.
Thanks for your good wishes and I send you mine.
A friend of mine who has been diabetic for a number of years went on a low carb diet along with me. We both lost weight and his diabetes went in to remission. Unfortunately all the weight I lost before I had shingles has piled on due in part to the drugs and being so down that eating was the only pleasure.
Hi Liz, reading what you said about your specialist not believing you have PMR and wanting you off steroids to see what is going on sounds like mine... I am considering it but the pain in my hands and neck are awful now and I am on 8mg... I keep getting told that staying on steroids is likely to give me pain in the future... and she is trying to prevent that. I really am not sure what to do but it is good to hear that you are ignoring your specialist and going with your doctor... maybe that is what I should be doing too... Good luck with your journey! Elizabeth
"I keep getting told that staying on steroids is likely to give me pain in the future"
How caring! As I said the other day - I'm not sure I WANT a future if it is to be as painful as the last 3 months have been, With enough pred I have a pretty pain-free existence, there are other downsides but you can't have it all. But since early March I haven't been able to walk without pain - just like early PMR without pred was. Had I had to live with it for the last 18 years instead of just the first 5 - I really think I would have given up altogether. There has to be some pleasure in life.
Exactly so! No one in their right mind wants to be in pain for goodness sake, nor have all the wonderful add ons that can come with this condition, but if taking steroids is the only way to try and cope and try and live even a very limited life, then so be it. It’s hard enough without having a so called specialist not believe you which is more than enough to be totally depressing. This is what I have found.Like so many others here on this forum I have taken such heart and incredibly useful advice from you PMRpro and the other wonderful ladies here, which has kept me going. You know exactly what you are talking about and have gone through your own hell with this especially recently and I can only take my hat off to you and hope those of us struggling can take hope from how you deal with it to help all of us. An enormous thank you!
Hello, what a pain, that your specialist seems like mine. Of course, in any case if you do manage very slowly to creep down to zero there is nothing to say that during this time you will get a flare and have to go up again. Earlier this year and until very recently I had managed to get down to 7 mgs and was very much hoping that come the autumn I would get to 5 mgs and I would be very happy to stick at that for the foreseeable. However, it was not to be and have had a couple of bad flares and have had to go up to 11 mgs but now at 10 mgs. I wouldn’t say I am completely pain free and still can’t do very much, but really just trying to get back to how I was a little while ago.
All intensely frustrating. Am trying, as I have had to learn , a long time ago, to pace.
You are kind to respond back to me, thank you. I remember you managing to do so well in losing weight, I was incredibly impressed. All the more depressing that it has all gone back on again, but entirely understandable. I know exactly what to do and for the most part do it! However, like you say, eating things that are nice and that you fancy when so much else is rubbish, always seems a small price to pay when trying to deal with all the other stuff. Also trying so hard to contend with diverticulitis which has caused lots of nasty issues and also dreadful teeth, so having to be careful with types of food anyway! So, yes, low carb is definitely the way to go and brilliant that your friend managed to reverse his diabetes. I’m on Metformin and just waiting to hear back from the blood results what that will be like this time, possibly not good, as a lot of chocolate stuff has been eaten!
Being down is unsurprising too. I am so sorry about this. I have moments when it all gets you down and you have to cancel things you looked forward to doing because you know you can’t. Also that every day you have to make lots of compromises just in order to achieve very basic stuff and sometimes you just can’t manage to do even that. I cannot imagine how much you are having to deal with. I do so wish one of the medics would be able to refer you to a really good specialist in another hospital who could help you even with a phone/ Zoom consultation. Do you think that might be possible? I should think the thought of you trying to travel anywhere too far would be completely out, but it would be wonderful if you could get a consultation through technology .
Thank you for your good wishes and I repeat mine to you with hope that somehow you can get access to someone who will be able to help you.
Liz
Here across the pond we have the same kind of deal. Stay in your network or pay 20% and go out of network
I found a Jewess that left the network because they would not let here deviate from protocols
Everything is a algorithm in network and only as smart as the programming
This rheumy had serious issues with how she was permitted to treat her patients
I feel lucky to pay 20% cash out of pocket
Good investment considering how much I make a year. If she can keep me working
Personally I just don’t trust latest Pharma stuff
We see lawsuits on the tele all the time for these FDA approved drugs. I am not a lab rat
Dear Brian, I have been catching up with your posts this morning and just had to say how sorry I am that you are still having a terrible time. Really puts things into perspective for me! Keep us informed as to your decision as I think more and more of us may have to go down the private route. I am now 6 months overdue to see my Rheumy here & I was told it would be 5 months to see an endocrinologist but luckily it’s been about 3/4. Life must be intolerable at times & I wanted to send my very best wishes to you both for some real improvement very soon.
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What am I going to do?
Diagnosis going on Low-dose methotrexate
Going downhill or is it winter?
It all seemed to be going smoothly, until …..
Tapering having a go
