Help, not sure what to do next!

[Paininthenck]

Firstly please accept my apologies for the long post but I feel I have to explain in detail as I am in such I dilemma as to what I should do next.

I was diagnosed with PMR in September 2020 following a period of significant fatigue, lower leg, hip stiffness/pain and generally feeling unwell. I had a slightly raised ESR (28) and GP put me in 15mg pred. Within 24 hours I was like a new woman, pretty much pain free, fatigue gone, I felt reborn. I gradually reduced my Pred dose as advised by my GP and all was well until around June 2021 when I reached 7mg pred. At this point I started to feel unwell again, very tired, pain in my knees, hips, ankles but, and I know this sounds stupid, I did not connect that this was the start of a flare as I did not know you could flare! Yes, naïve but I didn’t find this forum and all the great advice and information until October 2021 and just hadn’t realised. I carried on 7mg pred until late Sept 2021, by which time I was feeling really dreadful. l managed to make a GP appointment (such a challenge now) who advised I increase my does to 10mg. I did this reluctantly as I have had loads of Pred side effects and just want to get off it. Increased my dose to 10mg, this didn’t help, then found this forum and started to understand the illness and what I should do to try to manage it. Therefore I increased to 15mg still no improvement, so added another 2mg and this seemed to make the difference, my symptoms began to subside. From October until December I remained at 17mg and then tried to drop to 15mg. This didn’t go well, symptoms returned so I went back to 17mg with a plan to follow the 5 week tapering plan that the lovely Dorset Lady provided. I was feeling really well and ready to start the taper, but, 24th January I got Covid. Wasn’t too unwell with it and was given the antibody IV treatment and returned to work after 2 weeks feeling ok. Since then I have started to feel really unwell again with a return of back, neck, shoulder, hip pain and headaches plus awful fatigue. Given this I reluctantly increased my Pred to 22mg, hoping this would do the trick, but it didn’t make any difference. I am feeling so unwell now, fatigue is terrible and neck, shoulder pain the worst it’s ever been. I increased Pred to 25mg with my fingers firmly crossed but I am still not seeing any significant improvement after nearly 3 weeks at this dose. I do feel that Covid has had something to do with this flare but feel stuck and very low and depressed. I have had to get signed off work as I really am not coping at the moment. I am at a loss what to do. I am so reluctant to increase my steroid dose higher as such a slow journey down and I have loads of Steroid induced issues now, such as diabetes, high BP, moon face etc. and I have completely lost confidence in my decisions and what is the best course of action! I just feel I am going up and getting nowhere so would really appreciate your advice as to whether I should try another increase

On another note. I initially started to feel unwell in September 2018, neck and shoulder pain, fatigue but the main issue daily, painful headaches that would wake me up. Daily headaches went on for several months, alongside skull sensitivity. After much pushing I was referred to a neurologist who diagnosed migraine and offered me a greater occipital nerve steroid injection there and then, which having had a headache for 7 months I accepted. This reduced the headache to bearable alongside daily gabapentin 900mg and I had another injection in Nov 2019. I never connected the possibility of GCA until I was diagnosed with PMR and read about the connection. I raised the concern with my GP but as temporal pulse was fine I was dismissed. I further raised at a neurology appointment (when I still had them) and was referred for a temporal lobe ultrasound which was normal. I have also had 2 CT scans due to attending A&E with severe headpain/persistent vomiting but both raised no concerns. My head had been quite clear for several months but since this flare the head pain and scalp sensitivity has returned alongside the localised stabbing pain on the right hand side of my head. I have no jaw pain but do experience difficulty swallowing on occasions. Is it possible to have GCA with no jaw issues? I am just not confident that there is no connection between the headaches and PMR.

Finally, I have never seen a Rheumy and have been thinking that it might be worth getting a private appointment as I really feel I need some proper guidance/assessment. I live in south east England, Hampshire and can travel a bit so just wondering if any of you can give me some recommendations. I apologise again for the long message. I really have no confidence in making a decision about next steps and I just don’t know what to do. I am so grateful to have found this forum, so much information and support and I really am feeling quite lost at this point, friends and family do not understand and often feel very alone. Thank you for being there 

[SnazzyD]

Oh my, what a pickle. I’m not surprised you don’t know which way to turn. Did you up your dose to 25mg off your own back or under supervision of the doc? I get the impression it was your idea. If it was me I’d want a specialist opinion and someone to get back to basics and revisit your whole situation. It is quite possible you have had long Covid type issues thrown in too and chucking Pred at that isn’t likely to help. It may be you have large vessel involvement or GCA is not in the vessels scanned but really we can’t say. You could ask for a PET scan that would show up vasculitis it it depends on what you’re Pred dose it now. Re your diabetes, is it actual diabetes or persistently high blood sugar from the Pred? Is it controlled with anything? Did you try the ultra low carb diet that helps with controlling the Pred induced glucose spikes?

Hopefully someone here can point you to a good specialist.

[Paininthenck in reply to SnazzyD]

Thank you for your reply. Yes I upped my dose to 25mg but have since seen the GP and he has advised to stay at that dose for now and review in a couple of weeks. But it’s not helping yet and I may not see that particular GP again as it’s a large practice and you cannot select who you book with!! I am due for review next Monday so will start to make more fuss about a rheumatologist referral but in the meantime will follow up any private suggestions. I’m caught between is this PMR glare, long Covid or something else as well like fibromyalgia. I do have quite a lot of OA as well, so difficult to identify which pains are which. Thank you for your support, greatly appreciated ☺️

[SnazzyD in reply to Paininthenck]

Unfortunately you still need a GP to refer you privately. Just a thought, it might be worth writing a letter describing how it has been and give a sense of the protracted suffering. The trouble with seeing different doctors is that they usually fail to have any sense of the timeline and how you’ve been suffering and what came after what. To be fair, their notes are not an easy way to access your journey because they have already been filtered by the previous writer in a summary and after a while it requires a long sit to digest it all and that doesn’t happen. There will be nothing about how you truly feel or how it’s affecting you apart from a cursory thing like, “patient fatigued”. Perhaps bullet point the events described above and just say something’s not right, it’s been going on long enough and the picture is getting confusing as your accumulated dose of Pred increases to no avail. Anything more than a straightforward PMR is out of a GP’s skill set to be fair to them but they do need to know when to throw in the towel and hand over the baton.

[Hunter134 in reply to Paininthenck]

My heart goes out to you for iam struggling myself with a flare .I upped my prednisone too from 10 to 15 now 20 but it's not quite doing the trick either.I get a telephone call on Monday and I think he's adding another drug to the mix .This disease can be relentless and so painful.I do hope you get the help you need as I do myself.Its scary not knowing what to do with such poor healthcare now.Good luck

[Paininthenck in reply to Hunter134]

I’m so sorry to hear that, it’s so overwhelming isn’t it, I cannot get my head around how restricted I am now having been so active for years. I have always been able to get through most things by truly believing it could be much worse but genuinely struggling to hold on to any positives at the moment, but I know that will pass. I really hope you start to feel better soon and the 20mg starts to work. I have a private rheumatologist app next Tuesday and am really hopeful that he can give me some proper guidance. Take care ☺️ Xx

[Hidden]

I don’t have PMR but Stills Disease which manifests as RD.I’m sending you courage and support and hoping you find answers with a good consultant soon x

[Paininthenck in reply to Hidden]

Thank you for your support. I’m on to a rheumy now so fingers crossed I’ll make some progress. Take care 👍

[Nextoneplease]

Hi there 😊

I’m so sorry you’re in this situation, I feel you need much more medical support. I’m so glad you’ve decided to call a halt to increasing the pred, and instead seek a proper diagnosis.

I’m sorry I can’t help specifically, but I’m sure others will be along soon who can. In the meantime I send you my very best wishes. Hugs xx

[Paininthenck in reply to Nextoneplease]

Thank you, your hugs are greatly appreciated. Sometimes that’s just what we need ☺️

[SheffieldJane]

As a matter of priority I would want GCA eliminated as a possible diagnosis and contributing factor to your difficulties with tapering. I did not have jaw involvement. Although I had headaches my GCA affects the peripheral arteries and the tell tale signs were only spotted in the arteries of my left armpit during a specialist head and neck ultrasound scan. My temple arteries were clear. Other scans CT and MRI had drawn a blank. My diagnosis is GCA/ Large Vessel. Vasculitis. One in 5 people with PMR can go on to develop GCA they are closely related, some say even a manifestation of the same disease. All that difficulty with tapering points to something else going on. You dealt with your symptoms to the best of your knowledge at the time. Definitely pursue your idea about a Rheumatologist. I hope someone comes forward with a recommendation for a rheumatologist with a good reputation for our diseases in your part of the country.

[Paininthenck in reply to SheffieldJane]

Thank you. I have made contact with recommended Rheumy, he’s not far from me at all. It’s interesting how many of you have had GCA without the jaw pain, as GP seems to see that as the gold standard for suspected. I went from never really suffering g headaches to daily, significant headaches pain, from my neck to my scalp, often feeling like I had walked into a cupboard very hard. I had to make a real fuss to get a neurologist appointment and she only focused on migraine. But the steroid injection did really help, headache really subsided so maybe is migraine, but I would still like someone who understands PMR/GCA to see the whole pic and rule it out from all of the information. Hopefully, I’ll be able to update you all soon, thank you for your advice. 😊

[PMRpro Ambassador in reply to Paininthenck]

The pred would probably also relieve GCA headache. Having a steroid injection for something else is often the door opening for a PMR diagnosis - why not for GCA?

[Blackcat1M]

Sorry to hear you have been so unwell, I cannot give you any advice but there are some super ladies here that will, I wish you well and please take care sending hugs

[Paininthenck in reply to Blackcat1M]

Thank you 🙏 😊

[Mary63]

What about Rod Hughes at Chertsey? It’s not a huge distance from you. That is what I would do in your circumstances. Good luck, and let us know what happens.

[Paininthenck in reply to Mary63]

Thank you. Contact made, fingers crossed I’ll see him soon 👍

[Sho-Sho]

What an utterly miserable time you are having. I would definitely request to be referred to a Rheumatologist - I think The possibility of GCA should be investigated, not many GP’s have much experience with it (I never experienced jaw pain when I was diagnosed with it 6 years ago, I had an Temporal Biopsy which was positive) just very severe headaches, scalp tenderness & generally feeling very unwell. Also expert help with the management of your steroids which as you are experiencing, can result in nasty side effects.Don’t be fobbed off, insist on a referral.

I’m afraid I can’t help with who to see as live in North Somerset, but sure someone on this forum will be able to help.

[Paininthenck in reply to Sho-Sho]

Thank you for your reply. I remember when I first saw the neurologist she did blood tests and said they were fine except one of my inflammatory makers was raised, but nothing to worry about! That was in 2019 and then I went on to develop PMR symptoms. I cannot believe it’s not linked. Anyway, thanks to recommendations from others hopefully will soon see someone who will have a more open mind and look at me holistically rather than separate issues. I really do appreciate your support 😊

[MiloCollie]

Oh my what a crap time you’re having. I feel your desperation through the phone?? Get some specialist info and help asap. Good luck and keep your chin up! 😍

[Paininthenck in reply to MiloCollie]

Thank you, I’m on it now I have a recommended name. All the replies have really helped, just so good to know there is so much support and caring people out there. ☺️

[DorsetLady PMRGCAuk volunteer]

Hi,

Link for Dr Rod Hughes -

drrahughesrheumatologyltd.com

You can have GCA without jaw issues, mine came late to the party, but your other head issues do sound very GCA.ish.

If you see Dr Hughes privately and he agrees he may well get you transferred to his NHS list.

jinasc has a list of Rheumies, so when she sees this (have tagged her) she will PM you.

Please let us know how you get on.

[Paininthenck in reply to DorsetLady]

Thank you, I have made contact, will let you know how I get on. Now have to try and make contact with the Gp for another fit note, that’ll be a challenge 😂

[SusyTe]

I would also recommend Dr Rod Hughes - he works in Chertsey out of the BMI Runnymede privately and St Peter’s on the NHS. I would see him privately first if you can. I am sure he will listen to you and do his best to help you.

[Paininthenck in reply to SusyTe]

Thank you 🙏 I have made contact so hopefully will be able to see him soon.

[Zebedee44]

Ditto SusyTe, get in touch with Rod Hughes at Chertsey. Maybe try and get some tests and results to show him and keep a diary of dose and symptoms, especially the headaches. Have you tried taking paracetamol?

[Paininthenck in reply to Zebedee44]

Thank you, I have made a request via his website and will phone as well to get appointments as soon as possible. 👍

[PMRpro Ambassador]

Rod Hughes at Chertsey.

drrahughesrheumatologyltd.com/

He does private - for speed - but will usually add patients to his NHS list if appropriate. But worth every penny.

I suspect a lot of the problems now are Long Covid but your increasing pred dose has really rather clouded the view while your doctors are probably looking for zebras rather than horses having heard hoofbeats! A temporal pulse only applies if the inflammation is there, and any single so-called typical symptom of GCA almost never appears in every patient - even headache only appears in about 70% of patients. And often the headache is occipital - at the bac of the head - and despite that being a region that GCA favours, often doctors tell patients the headache is in the wrong place! You need a rheumy and you need them soon.

[Paininthenck in reply to PMRpro]

Thank you, I have already made a request to Rod Hughes via his website but will also try phoning directly as I just want to move this forward. I think your right about Covid, as joint aches pains are long covid symptom but it’s all become so confused, I honestly don’t know what is what!! But the headaches are quite significant again, as is the scalp tenderness and I know my GP will just dismiss.

I feel much more positive now I have the start of a plan, really do appreciate the advice, help and support ☺️

[PMRpro Ambassador in reply to Paininthenck]

I'm just horrified that PMR symptoms plus headache plus scalp tenderness are just dismissed out of hand. We keep telling the rheumies doing research they need to get the GP trained to recognise what may be going on. They have these recommendations for a GCA fast-track set up but patients don't self-refer and getting past the gatekeeper really can be a problem.

[Paininthenck in reply to PMRpro]

I have an appointment with Rod Hughes next Tuesday so at least it’s a really positive step in the right direction. Thank you for all the help, advice and support. I’ll keep you posted as to how I get on x ☺️

[PMRpro Ambassador in reply to Paininthenck]

Hope you get on with him as well as most do

[ImC_]

Sending empathy and good will and the hope that the advice of the experts here prove to be the start of the way out of your awful situation. Best wishes.

[Paininthenck in reply to ImC_]

Thank you. Good wishes go such a long way and I really appreciate all of the support from you and everyone on this site ☺️

[borednow]

I bypassed my GP on a matter which he repeatedly misdiagnosed. In desperation, I rang our local Nuffield and got a private appointment within 3 days, a correct diagnosis and a prescription. Suggested I took the prescription to my GP and if there was any problem I was to let the specialist know and he would have a word with my GP. There has been no problem whatsoever. Well worth £230. All the very best - you shouldn't have to go through this.

[Paininthenck in reply to borednow]

Thanks, I’ve managed to get a private appointment for next Tuesday with Rod Hughes as recommended so fingers crossed that my outcome is as positive as yours has been. 👍

[Noosat]

What a horrble experience. I am down to 3mg , the second time in 3 plus years. It never seems to get any easier. However, after a month at this level, I feel that I am coping better than las t ime, so hope to drop again in April, Lots of luck on your journey. It is just so tiring,

[Paininthenck in reply to Noosat]

That’s good to hear, I really hope it works for you this time. Fingers crossed 🤞☺️

[Sharitone]

I didn't have jaw claudication or scalp tenderness with GCA/LVV, but this - I am feeling so unwell now, fatigue is terrible and neck, shoulder pain the worst it’s ever been - sounds horribly familiar. I hope you get your appointment very soon, and in the meantime, if you get visual symptoms, you'll know what to do.

[Paininthenck in reply to Sharitone]

Thank you. I find it amazing that so much stock is put on jaw claudication when so many on this site say that wasn’t one of their symptoms! Hoping my appointment next week will give me some answers. All the best ☺️

[cycli]

what a pickle. Totally understand and relate. This disease is at the least confusing but also so destructive of confidence in what to do. It certainly sounds like you also have GCA. If so my condolences. I too have both and it isn't the best thing to have. There are other conditions which almost mimic this and cervicogenic headache is a major consideration. I have this also as I have done a lot of damage to my neck from cycling accidents over the years. A cervical scan might show whether you have chronic issues with the neck. It is very confusing sometimes and increasing pred. won't get rid of this. Massage of locked muscles and a 1000mg dose of paracetamol or codeine will help if it isn't GCA.

[cycli]

As an aside I note that you got to 7mg before things started going bad. Why does no one mention adrenal function restarting possibly having an effect? just a thought.

[Paininthenck in reply to cycli]

Thank you for your messages. I have been thinking about adrenal function too. It would fit wouldn’t it, but never occurred to me at the time as I wouldn’t have known as I hadn’t done my homework. Won’t be as slow in the future.

I do have neck issues, bulging cervical disks from 2-6 so also confuses the symptoms, but no medical interest in potential connection so far!!Hoping that when I see the rheumy next week he will look at the whole picture and hopefully come up with some thoughts. Painkillers make no difference unfortunately.

All the best to you and thank you for your support 👍