PMRGCAuk
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Lost the plot

I’m at a quandary to what or where I’m going in other words I’m lost. I have had PMR for about 18 months or a bit more as it’s hard to determine the exact time it started. Here’s my story. It mainly affected my upper arms which became impossible to lift but with normal bloods I was given Pred by my GP suspecting this was what I had. Yes, result! After the initial 15mg I was on cloud nine felt 15 years younger with endless energy I had lacked for years. The pain was gone and I felt great. Then the reduction began with the supervision of my GP, I mg per month but it was a struggle and by the time I was on 5 mg which was about last October I felt like ‘doggies doo doo’ the pain in my arms were still tolerable but I had hand stiffness and wrist pain plus severe neck and head pain mainly on the left side. Side stepping for a minute, I was under a Pain Specialist and have been for many years for my back ( I had a secondary spinal fusion 4 years ago so I’m bolted from top to bottom in in severe pain ) who was the first person I mentioned this pain to at the point that PMR was getting unbearable he knew instantly that this was the symptoms and I had bloods done but my CRP and ESR were fine. I went on steroids however and all was great the pain went within hours. It only became came apparently almost a year later at the point of 5mg that when I had more bloods done they were no longer normal and the level was rising. My Pain Specialist sent the results to a Rheumatologist at the hospital and got a letter of confirmation it was PMR. In one way it was a relief in another I was not certain where this was going. Rheumatologist said up it to 10mg of pred which I did at the end of last year. At this point and to date I’m still only under my GP not a Rheumatologist but he doesn't really know what to say so I asked for referral to the Rheumatologist dept as my Pain Specialist has already sown the seed and they are happy to take me on. However our hospital has a 4 to 6 month waiting list - how great is that when you are in limbo? Back to the here and now and how I am. I’m stuck on 7mgs with little of no arm pain, painful hands and wrist but improving during the day after I take pred in the morning. The main thing that is cutting me like a knife is my neck and head pain it’s so painful and I have got constant headaches some so bad I go to bed. Using my arms makes it worse but equally I can wake with my head pounding. My problem is, is it PMR that’s causing the head and neck pain or the fact my back is fused except my neck and it’s causing to much stress on it. I know that steroids well help either way as it gives general relief. Now I don’t know what to do? Go down in pred and feel worse than I do know stay the same and feel rough, or up again and to what degree? Thank you for listening sorry to waffle on but sometimes we don’t know what to do for the best. 😞

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I think your pain specialist needs to contact the rheumatologist again urgently with details of the headaches and the rising blood markers. I think it is possible you have progressed to GCA with PMR having been a forerunner - and you need a considerably higher dose. It may not be the case but it can't be ruled out and MUST be considered. And if that is the case - your referral to the rheumatologist should be as a medical emergency, just like a stroke or heart attack, no 4 month waiting list.

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Thank you for your reply I have blood test on Wednesday at the Doctors, see what they come up with. Easier said than done my Pain Specialist can not do the referral it has to be done by GP as stupid as it sound. Unfortunately it’s the way thing have to be done where I live that’s why I went last week to to the doctors

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Yes, consultant to consultant referrals seem to be a thing of the past (which seems ridiculous as they often work in the same hospitals, and can chat cases over easily enough) They have to go back to the GP, delaying tactics IMO. From GP to a panel to discuss whether a referral is worthy. GGMS!

You always have the option of A&E Suffolklady. And any vision issues DEFINITELY A&E

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Yes, sorry, I'd forgotten the ridiculous anomaly of now having to wait for a GP appointment in order to have an emergency referral to a different specialist ...

Then you need a bullet list before appearing at your doctor's and emphasise the headaches, full details. If in the meantime you have any visual symptoms of any sort please go to A&E asap.

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I don’t have vision issues but my eyes have deteriored over the last two years since I’ve had an eye test but it could be age related. Nothing works the same as you get older. Have an appointment at the Opticians this week I don’t know whether the test they do can detect anything but I’m going to tell I’m I have PMR as I didn’t have it last time I saw him

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I saw GP, optometrist and chiro (briefly) last week. GP and chiro thought my headaches (around back of skull from ear to ear, where the head meets the neck; and temples, across forehead and into right eye) were tension headaches. Optometrist wasn’t so sure, he wanted to contact my GP to demand blood tests. I didn’t accept his offer at that time. But he was knowledgable about PMR, steroids and GCA risk. (I think he was a bit excited at a potential urgent case in his run of the mill week ;) ) He took a long time examining the back of my eye, my appt lasted nearly an hour (was expecting the usual 30 minutes) he did pressures and field of vision. If there was anything there, he was determined to find it. (I believe they can see a ‘whiteness’ around the optic nerve if there is a blood supply problem).

So definitely tell him that you have PMR, are concerned about headaches, and would like him to check your eye health as well as a sight test.

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Thank you so much for your input Soraya, i will certainly do as you say and emphasise my concerns. I’m glad I’ve got an appointment at least I will be doing something positive.

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not an expert but i would go back up a couple of mg see if it works till you get yr appointment x

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I think I will at some point have to do that. Other than my neck and head that may not even be related to the PMR my arms although still a bit tender are quite manageable on 7mg. I was on the home limp and going well but then that's PMR for you lurking around the corner to bite you in the bum...literally!

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Ohhh, Suffolklady, I am by no way an expert in any of this, so I usually don’t offer ‘diagnostic suggestions’. However, I remember my pre-diagnosed GCA headache. When I read your description it was a bit of a flashback for me. Debilitating headache, put me to bed, nothing touched it, etc. Once experiencing that headache, I don’t think it’s forgotten. I’m not saying it’s GCA, but I want to echo PMRpro that you need to jump on this with your doctor to rule out GCA. If he doesn’t mention GCA, you must! Also, any changes in your eyes run, don’t walk, to the Emergency Room. Hoping for the best for you!

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Edit: echo PMRpro and Soraya_PMR. For the time it took me to compose my thoughts and do the one finger type on the iPad, the conversation was off and running. I simply must learn to type on this with more than I finger.

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One fingers good more than one finger my brain gets confused and that doesn’t take much lol.

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I agree Insight329... there is nothing like a GCA headache and the neck pain is horrific.. I remember just crying...

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Yes, yes and YES the absolute worst headaches I’ve ever had in my life. I was nonstop nauseous from the pain, could not speak, I tried but the words came out all wrong like gibberish. Terrifying because it was so drastic. So important to heed the warning signs.

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I’m going to get my result at the end of the week I will certainly emphasise my headaches not sure if I will get to see anyone quicker.

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If me, I’d be on the phone tomorrow and throwing out the words ‘fear of it being GCA’. That should produce some speed.

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YES! Me too.

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Tell them if neck or base of head hurt too... also if any tenderness above ears or down sides of neck into shoulders... Tell them about every ache and pain!

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Yes I will tell them everything even if my big toe hurts.

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Rheumatology appointment came through the post this morning 8th May- result!

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Thank you Insight329. It’s so difficult to determined the cause of headache/ neck pain as my back has contributed to neck pain for years but it only came about when I over did things like to much gardening, I use crutches thought that might be the problem too. Now I get it if i lay my head on a pillow the muscle from the neck to the ‘knobs’ under the skull across the head into the eye socket which has been mentioned to my Specialist and was established to be trauma from the operation I had. That was all pre PMR.

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Being unable to lay your head on the pillow is a typical description in GCA.

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Mmm not sounding good

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Hi again Insight329 a quick question with GCA is the head and neck pains constant without a break from pain or is it intermittent? Just wondering

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I remember it as constant. I watched the clock so that I could take more pain meds, different pain meds, anything,— just praying for some relief. Of course, nothing touched it. Pain in the temples, too. Hurt to run my fingers through my hair. Hurt to have my glasses on. I didn’t have neck pain. I wasn’t prone to getting headaches. I foolishly thought ‘migraine’.

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Mines not constant I must admit. I just sleep a lot to get away from it. I have opioids for back pain but they don’t always help. My head is sore and I can feel pressure points in the scalp that are painful to touch. Had a headache this afternoon but tonight it’s subsided

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Your experience is different than mine. Pain, no matter the cause, is difficult to live with. Hope you get some relief (and answers) very soon!

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Thank you that means a lot to me

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I remember mine as "bad to worse." Never really gone completely, always in the background... more tolerable at sometimes, than other times. I slept like 4-6 during the day; and yes "pressure points in the scalp that are painful to touch."

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I agree with PMRpro and you must follow this up to eliminate the GCA threat, the only thing I would add is if you get ANY form of visual disturbance then go straight to A&E don't wait for anything they'll do bloods etc when you get there. You're eyesight is too precious.

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Thank you Telian I will do. Tomorrow is bloods done at the doctors. I presume unlike with PMR that the markers on bloods are more significant with GCA? My bloods were near normal for the first year of my journey with PMR and never got exceedingly high at any time but high enough at a later time

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Hi,

Bit late into the conversation, but my markers with GCA were not particularly high - ESR 58, CRP 26.5 when diagnosed. I don’t think I ever had PMR although many years later I did find out that ESR was 30 at beginning...and deemed “satisfactory”, and had only risen to 58 after 18 months of pain, pain & more pain. So don’t assume anything regarding readings - they are a guide only. Symptoms are the key.

When they came, my headaches were constant, felt like a two steel bands around my head from nape of neck, over top of head and down face parallel with eyes. Like insight329 I kept a diary of painkillers to ensure I didn’t overdose.

As you say, you have other things which could be causing your headaches, but you do need to rule GCA “out” even if that means a visit to A&E. These things can happen very quickly, and even though your sight may not be as good as it once was - it’s still very precious!

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Morning DorsetLady. Thank you for your input. It's very useful to know. I must admit from the two accounts I've got from you and Insight329 my head pains not like you described and this morning my pain is virtually gone from my head and neck not to say it won't return later. I can only say that if it is 'back' related the steriods suppressed it but on reduction the pain is returning with vengeance but that's no reason to stay in them. If I can reduce will but I need further investigation I realise that. Agree sight is very precious and I'm hoping the optician will give me a through examination. I know I need new lenses and it's just the process of age but I can't afford to ignore this.

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Not necessarily but in my case they were - DL has come in between and I reiterate what she says about readings and symptoms.

I have GCA & PMR followed but initially I was being treated for heart & migraine problems. Heart because I had terrible jaw ache with numbness, the headaches were unlike anything I'd had before, not at all like migraines which they kept treating me for. They were like I was carrying a sand bag on that side of my head, couldn't lift the head.

Potted history.

I always had slight visual disturbance, which is why they thought migraines as it used to go quite quickly. As time went by my new GP was saying he needed to monitor this more as it could be something that could cause irreversible blindness, he didn't elaborate at that time but gave me one last treatment for migraine. He knew about GCA thank goodness as another GP in the practice poo pood it! So thankful I changed to this new GP. This was meant to be as they say, that evening I was ready to take the tablet but when I read the packet it said not suitable for over 65s! which I had recently reached - so didn't take. My visual disturbance was like a waterfall effect, best way to describe is if you've seen Stargate Atlantis and the hoop they go through, I'd had that intermittently for months (blamed it on migraine). Next thing the whole eye is now covered with this waterfall effect and couldn't see at all, it was painful with a dragging sensation on the eyeball. I took strong painkillers, which didn't work, and went to bed I felt so ill. Lucky lucky me I woke with my sight back! but went straight to the doctors who fast tracked me to Rheumy - instant diagnosis via bloods and positive ultra sound. Two days later had temporal biopsy which was negative! GCA was still diagnosed and went on 50mg Pred which worked immediately.

I was told that if my vision had gone black then the eyesight would not have returned, but for me thankfully that wasn't the case, just the glaring waterfall effect - another fact from my experience, there are so many out there...

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They can also remain "in normal range" in up to 20% of patients with GCA. There is even one form called occult GCA where there are no symptoms at all - until the patient loses their sight.

Really, really, really, if pred suppresses the pain - please don't assume it is anything else. It may not be GCA - but it is too late when you have lost your sight.

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Morning Suffolk Lady, This is just a suggestion. Find a Reiki Healer within your Hospital. Ask that person to do a treatment on your spine. It`s pain relief. If you want pain relief, you have nothing to lose.

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Morning Oldman-1. Thank you for your advise. Yes my Brother does Reiki a very good way to combat pain and have used it in the past. Also he does Shiatsu which is another source of relief. Unfortunately our hospitals are stretched to the limit and to find one to hand would probably be an impossibility. Thank you for your reply

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I suggest that because I treat people using Reiki. No reason you shouldn`t have your Brother treat you ? Unless there is something you`ve not disclosed why your Brother can`t tret you ?

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No it’s not an issue my brother has been with me through all my problems. He has helped to a certain degree in the past with neck stretches with shiatsu and reiki for relaxing and releasing. I have had neck muscle pain for years which has eventually invaded my head in time but it was only with provocation that it would occur. Now I get it more often with less movement. I can get relief sometimes with a firm head pull laying on the bed releasing the muscles in left side. All I can do is get it checked out ASAP. Thank you Oldman-1 good advice

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: ( Could it be GCA?

I had undiagnosed PMR for 18+ months.. it wasn't until I was crippled with a relentless headache, neck & shoulder pain that they diagnosed both GCA & PMR!!! I hope I am wrong...

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Me too. Haven’t had any experiences with my eyes but that’s no guide I know. How did you finally get diagnosed after the eighteen months?

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I had developed full blown GCA! ...so in retrospect they looked at my records and said, "Oh and you've probably had PMR for 2 years...." Nice, huh?

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This is such a under rated subject why there is so little research this is unbelievable. Until my pain specialist said think I know what it is I have never heard of it. Plenty of posters in the pain clinic for fibromyalgia and groups but zilch on PMR.

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Honestly there IS a fair bit of research going on! All over the world. Even though much of it is not PMR/GCA specifically but autoimmune disorders in general as that is the way to find the cause.

The posters and support groups is a different matter - and the only reason you have this forum is because 5 ladies "met" on the Patient.info PMRGCA forum some 10 years ago and started the process of setting up charities in England. At least 3 of those ladies are still present here despite having been in remission themselves for about 6 or 7 years at least. Scotland already had a charity. Now there are 4 in the UK alone and 3 forums.

It is also up to all of us to do our bit - nothing comes from nothing.

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Good to hear

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PMRpro, can you reveal who the 5 ladies are that started the forum? I need to include them in my ‘heros list’.

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Kate is one - I believe it was she who had the germ of the idea about getting together and put up a post on patient.info. . Celtic and jinasc are 2 more (one runs the Chertsey support group and the other formed the NE support charity). One I have never known, long before my time and I have to blame pred-brain for the other but I don't think she is on any of the forums now.

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Thank you! So good to know!

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I had never heard of either also... but everyday on the PMR and GCA Facebook sites, they welcome 4, 5, 6, 7 new members!!!!! It's crazy!!!!

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This site is a Godsend

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Totally agree!

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Hello Suffoklady, it seems that you and I have a lot in common! I too have had my spine fused ( but only the lower part) and am waiting to see a specialist (funnily enough, in Suffolk) as I have pain higher up in my spine. I have not been diagnose with any specific condition apart from Osteoarthritis and Type 2 diabetes. But I am feeling very low at the moment and, have many of the symptoms mentioned on here! My hands and wrists are very painful and I am getting pain in my neck and shoulders and in my arms. I too am getting sudden headaches that seem to grab the front of my head and temples and the top of my head and scalp. I have an appointment to see a rheumatologist, but it's not till June ( been waiting since end of Feb). My GP has had blood tests done and they have ruled out RA, but have thrown up that I have a clotting problem that may be Lupus! Other blood tests have shown an enzyme in my liver is very high, so I am waiting for a liver scan, which is later this month.

I have had Osteoarthritis since I was 23 and am now 62. I am so fed up with 'putting up with everything' and putting on a happy face. I am very tearful and a bit withdrawn at the moment and my poor husband is feeling the full force of it all. I can't do much of anything I used to and I feel like screaming!! But it is good to know that I am not alone in the way I feel. So, thank you for sharing your thoughts on here.

I hope no one minds me joining your group as I have not been diagnosed with PMR. It may sound weird but, I think I would be relieved if I was diagnosed with PMR, as at least I would get some effective treatment! I have been on paracetamol and Tramadol for years now and they are not having a lot of effect anymore.

Thanks for letting me rant on. This is my first post, so I'm being a bit gobby with the details I'm afraid.

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Hello AnnTique. Pleased you were gobby as you say it’s good to vent. I feel exactly the same as you in many respects life can be a real drag especially when everyone around me seems to be living life to the full ( just my view of course this is not always the case). I too feel like screaming especially with the garden sprouting I feel I want to go out there and get stuck in but I know it’s short lived if I do. I’m useless at pacing myself I either go for it all guns blazing or I’m a mess and in great pain and laid up I just wish I was more sensible. :/

As many of us have said before it was a long while where we didn’t have any comfirmation of PMR, myself included, but although I finally got a letter to say yes we can say that you have been diagnosed I was relieved as you think you have just been ‘dumped’ with another obstacle in life that can not be explained. That’s how I felt with getting Scoliosis at the age of 13.

This morning I received a letter from Ipswich hospital with an appointment on the 8th May to see a Rheumatologist which is a positive move. Bloods tomorrow at the doctors and eye test on Thursday and I have just got an appointment next week at the Pain clinic next week. So at least I have things moving. My head pain is not to bad today only a mild discomfort. I feel my life revolves around my health I expect you do too. Hope you are having a better day today.

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If at any point you develop visual symptoms please do not hesitate to go to A&E and explain your history. Those headaches could well be the first signs of GCA and that need emergency treatment - not a 6 months wait!

Do you happen to know which liver enzyme is high? One called alkaline phosphatase is often elevated in PMR and another called gamma glutamyl transferase is raised in even more patients. Apparently this isn't common knowledge!!!

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The liver enzymes that are high are - Gamma glutamyl transferase 133u/L and analine aminotransferase 105 u/L. I have also tested positive for Lupus anticoagulant.

My headaches are quite sudden and short. They make my scalp tender and my temples hurt. It never lasts for more than a few minutes. I usually massage my scalp andtemples and the pain subsides.

Do you think I should mention to the rhuematologist when I finally get to see him, that I think I may have PMR?

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As I said, gamma glutamyl transferase is raised in PMR - and alanine aminotransferase is also raised in about 18% of PMR patients.

journals.sagepub.com/doi/pd...

I'd tell the GP now, having PMR is a symptom of GCA.

There are a few people with problems with the response of their rheumies in Suffolk but you are within reach of the fast-track for GCA at Southend with one of the world's experts in GCA, without whom the charities, the forums and much of the work done in the last 10 years wouldn't have happened. On the basis of blood tests and symptoms you appear to have a good chance of having PMR and also have several symptoms that could suggest GCA - your GP should be taking this seriously and making an EMERGENCY referral via the Southend fast-track set-up.

If your GP won't take you alone seriously - take your husband with you and get him to explain how ill you are. Don't gloss over the headaches.

pmr-gca-northeast.org.uk/as...

And if push comes to shove - Prof Dasgupta also does private work and would transfer you to his NHS team if he felt it appropriate:

spirehealthcare.com/consult...

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