Shifting location of GCA pain during eating

[Matt_Finish]

I am a 76 yr old man, adequately fit and usually very healthy. One month ago, I phoned my doctor who had me in within two hours, put me on 60mg steroids, amitriptyline, omeprazole and 75mg aspirin and sent off blood for testing. The results, unfortunately, confirmed her diagnosis of GCA.

I have been following this site since, have found it very helpful and, oddly, quite reassuring – the symptoms I have been experiencing seem to have been survived by other people!

During the first three weeks, continuing the situation pre-diagnosis, eating was painful. However, the nature and severity has changed since starting Prednisolone. Initially, the temples were very, very uncomfortable for the first 10 minutes of lunch but then the pain faded for the rest of the meal. In the evening there was a similar but much less painful experience. There was then a transition period when the temples hurt, but not so much, and the base of the tongue felt very weary and my throat felt sore. Now, the temples are more or less clear and I get a tired tongue and sore throat for some minutes when starting to eat lunch, not so bad in the evening. Is this transition usual?

Recently there has been a discussion about weight gain. Before my diagnosis I was aware that my appetite had declined. My long-term two or three pounds above 12 stone had drifted a little to 12.00. In the first three weeks after starting the medication, my appetite increased hugely but my weight went down 6 lb from normal in three weeks. It has stabilised over the last week. I assume it will start to rise again, if I do not moderate my current calorie intake.

[DorsetLady PMRGCAuk volunteer]

If one of major problems pre- diagnosis was eating/ throat/tongue, then it’s feasible that it might be the longest to improve.

Unfortunately the giant cell clusters are not necessarily spread evenly throughout your blood vessels - they are randomly scattered...which is why symptoms do vary in intensity from patient to patient.

For example my headaches were severe, but my temporal arteries were not in themselves distended nor painful - as it usually quoted as being a typical sign. Instead my ophthalmic artery was the one affected. My jaw/mouth was also affected, but that seemed to clear quicker than my headaches.

Can’t guarantee every goes according to plan, but so long as things are improving - good. However, presumably you can contact GP (well done her for being on the ball ) if not happy. You might just need an extra 5mg to really get to grips with things.

Just watch your refined carbs, but other than that just eat sensibly- bit difficult as Pred - particularly high doses - does give a case of the munchies.

And yes, you will survive! Me - GCA best part of 6 years, in remission for over 4....and retained my sense of humour! (Most important)

[Matt_Finish in reply to DorsetLady]

Thank you for a helpful and encouraging reply. I have, at last, been given a phone consultation, this Wednesday, with a rheumatologist. I await that with interest.

[DorsetLady PMRGCAuk volunteer in reply to Matt_Finish]

You might want to have a read through this before your appointment- healthunlocked.com/pmrgcauk...

[Matt_Finish in reply to DorsetLady]

Many thanks, again. There is a lot there and I shall re-read it tomorrow. I was interested to see the reference to euphoria, a state, albeit mild, in which I have been since starting the meds. Not entirely appropriate, given the situation but better than being in the depths of despair, without a doubt.

My long-term insomnia has got far worse but, strangely, I feel far less tired than I used to. Presumably thanks to the steroids, though what goes up has to come down eventually. As people have suggested very recently, it is best just to accept it, relax and perhaps sleep will sneak up on you.

[DorsetLady PMRGCAuk volunteer in reply to Matt_Finish]

The euphoria is caused by the high doses of steroids - but it will receded as a. your body gets used to the dose, and

b. as you begin to reduce.

Some do find that the euphoria is replaced by a feeling of depression as they reduce, Must admit I didn’t, but it is a common side effect of Pred.

[SnazzyD]

Only about a month in I’m not surprised it’s still letting you know it’s there. Perhaps inflammation ebbs and flows and the dodgy cells come and go in patches. It certainly can be non uniform which is one of the reasons the biopsy can be unreliable. What dose are you on?Re diet, carbs rather than calories (to a point) are the biggest issues, beyond the usual eating healthily thing. I had to cut everything carby on my plate but you need to find out what your necessary threshold is. Salt can also cause lots of fluid retention. Initially weight loss can occur but as inflammation abates the pounds can pile on if your blood sugar spikes caused by Pred are inflated by the carbs put in your mouth.

[Matt_Finish in reply to SnazzyD]

Interesting to have it suggested that the pain can be expected to carry on for a longish period. The pains in neck and head which had been really unpleasant for ten days and, particularly, nights before I contacted the doctor largely disappeared within a few days of starting 60mg Pred. I had hoped that it would do a completely thorough job. Clearly, my optimism was misplaced. Once again, it is very helpful to have the information. Thank you. How would we have managed without the internet?I have, regrettably, a very sweet tooth which has not manifested itself to date in any unfortunate physical consequences. Controlling it will come hard.

[strawclutching in reply to Matt_Finish]

I was diagnosed with GCA just over 5 weeks ago with similar aches to yourself in jaw, tongue, with tender temporal arteries and parts of the scalp. My GP was clueless, and because I had throbbing over my right ear, peered inside, said he could see nothing and sent me home to take paracetamol, twice in two weeks! Ended up at A and E after googling my symptoms and diagnosing myself. Started on Prednisolone 40 mgs but without PPI's - so returned to A and E a few days later with severe gastritis from acid reflux. After 4 weeks I began to taper Prednisolone, so now on 30 mgs but jaw ache returned after 3 days. So I guess Dorset Lady's explanation is right about the giant cells. She's so good! I also had the return of back ache, but that may be something else. Had another blood test but inflammation levels are still down, so staying on the 30mgs. Rheumatologist wants me to taper by 10mgs each fortnight because I have loads of side effects from the Pred - palpitations, up and down blood sugars (I'm also diabetic), sleeplessness, feeling faint. Just wondering what your tapering plan is for the Prednisolone and if it is much slower than mine?

[PMRpro Ambassador in reply to strawclutching]

I am at a loss to understand doctors inability to grasp that symptoms ALWAYS trump blood test - many patients on pred do not mount the inflammatory response even if they did originally - and that a return of symptoms while tapering is a sign to stop. There are very few adverse effects of pred that are worse on the ultimate adverse effect of GCA: irreversible loss of vision, And that remains a possibility if they continue to force reductions in dose despite warning signs.40mg is the bottom of the range of starting dose for GCA - and patients with jaw pain and/or visual symptoms tend to need more or to be kept there for longer. Reducing 10mg every two weeks is extremely fast.

[strawclutching in reply to PMRpro]

Must say I'm not confident about reducing by another 10 mgs this weekend as the rheumatologist told me. Although my ESR was the only 9, my CRP had gone up a fraction to 7.8 from 7.0 when I was on the higher dose, but they say this is not significant enough to alter the tapering plan. Maybe I should hang fire for another 2 weeks before dropping again.

[PMRpro Ambassador in reply to strawclutching]

I would - and I'd also only reduce 5mg at a time. 10mg now is 33% - when top experts in tapering say 10% of the current dose. It is all very well for her to want to reduce the pred but it must be done carefully or you risk a flare of the GCA and have to go back to a higher dose again.

[strawclutching in reply to PMRpro]

Thanks for that, I'd certainly feel happier doing it more slowly despite the side effects. The jaw and back ache are still there which will remind me. As long as the rheumy doesn't barr me from the clinic for ignoring the tapering plan.

[PMRpro Ambassador in reply to strawclutching]

Most side effects of pred can be managed or mitigated - if you tell us what is most difficult someone may be able to suggest something. Palpitations are most unpleasant I know - I have atrial fibrillation caused by the autoimmune part of PMR and although they are fairly well controlled with medication I have to put up with the episodes when they happen. One thing that helps me a lot is magnesium supplements which might be worth you trying.

[strawclutching in reply to PMRpro]

I always used to take Magnesium supplements and vitamin B complex which helped with my carpal tunnel, but since I had the resurge of acid reflux (the Gp suggested I drop one of the 40 mg PPI's in the evening - it was bad advice) my gastric tract is still inflamed, so any supplements make that worse. I can't take the calcium or alendronic acid either until it's healed. I've been eating bananas for potassium, and walnuts for other minerals. As soon as I start moving around, the palpitations start and if I don't rest, I feel dizzy, but they seem to get better in the evening, presumably when the steroids are beginning to wear off. They put sinus tachycardia in my notes. Is that similar to atrial fibrillation?

[PMRpro Ambassador in reply to strawclutching]

Not really - though I do also have episodes of sinus tachycardia which is when the heart beats normally but faster than it should, 60-100 is normal, above that is tachycardia. In a/f the top chambers of the heart, the atria, beat irregularly and fast and so the heart isn't working efficiently.

[strawclutching in reply to PMRpro]

I'm amazed at how long term sufferers of PMR and/or GCA are so knowledgeable and accepting - maybe that's not the right word - of all the other things that go along with the condition, treatment, etc. Us newbies are still in the non-acceptance phase and looking for a magic pill that doesn't exist. I am so grateful for the help offered on this site by people who have gone through so much more than me. So far, anyway! We must come across as simply bonkers.

[PMRpro Ambassador in reply to strawclutching]

Reaching the stage of acceptance is a tremendous step in living well with chronic illness of any sort. You have to remember that of all the autoimmune diseases, these two are not too bad at all - they do go away sooner or later and once diagnosed and managed they are unlikely to kill you.

No, not bonkers - just at the start of a probably long journey! Not helped by doctors who try to tell you it will all be done and dusted in 18 months (in your dreams for most) or that once you are on pred everything will be back to normal (if only).

[strawclutching in reply to PMRpro]

I will get there. I got used to being insulin dependent, even though I still resent it every day. We just have to be realistic and keep on questioning everything without becoming too much of a pain to helpful folk like yourself. Still waiting for the euphoria that many speak of from taking steroids. At least that might be some sort of bonus in the 'long journey'.

[PMRpro Ambassador in reply to strawclutching]

Yeah - me too!!! Euphoria? What euphoria? Other than the "OH, gosh, I can move and walk up and down stairs, don't need to crawl!!!!" - no, no euphoria

[Constance13 in reply to PMRpro]

Me neither! 😏

[strawclutching in reply to PMRpro]

Those are pitiful crumbs but when they're all you've got.....Yippee!

[Constance13 in reply to strawclutching]

Not bonkers - we all had these questions when we started (that was 8 1/2 years ago for me)!

As many have said/will say - one of the most difficult things to learn is "acceptance".

Good luck 🍀🍀

[strawclutching in reply to Constance13]

Wow. 8 1/2 years. That's a long time. I'm already facing the twilight years. Better start writing that novel that's inside me.

[PMRpro Ambassador in reply to strawclutching]

You're just a bairn compared with Constance!

[strawclutching in reply to PMRpro]

Oo it's been a long time since someone called me a bairn. I'm a Geordie.

[PMRpro Ambassador in reply to strawclutching]

Wae aye pet

[Constance13 in reply to PMRpro]

😂😂🤪

[suitcase1 in reply to strawclutching]

Thank you ! You my friend have just said what I've been thinking!! Bonkers and looking for that drug yes !!! Not going to happen I think .But at least I have found a place ppl relate .I feel it's like a nightmare .But know full well even when I waken up still be there .Thank to everyone that helps us newbies

[Matt_Finish in reply to strawclutching]

I cannot say how grateful I am to my doctor for her diagnostic skills and rapid response. I am sorry you met the other sort and hope that he/she does a bit of reading before dealing with you again.As my first contact with a rheumatologist will not happen until tomorrow I have no idea how tapering will unfold. My doctor has really passed me over to the hospital for the time being, which is fair enough.

[strawclutching in reply to Matt_Finish]

You were really fortunate with your GP. At our practise I rarely see the same one twice. I hope your rheumatologist is a good one. Good luck for your appointment tomorrow.

[Hidden in reply to Matt_Finish]

I too have a very sweet tooth and thus far not been able to control it. However, my rheumy was pleased that I'd only put on 8lbs....can't wait to get back to 9st. 7...chubby face me !! Now being on 10 mg from 40 mg when my GCA was diagnosed after the original 15 mg for PMR. Sadly, this disease seems a roller coaster with the Pred, up and down. My inflammation marker last Dec recorded I was running at 515, very high. Managed to get down ESR to 2 and CRP 7, but they have both risen again once tapering began. Trying hard not to stress about it as there is nothing we can do about it. As I've said so many times before, my concern is GCA due to eyesight loss if not treated quickly with high Pred. Hope you manage to lower your Pred without any probs. Good luck.

Anne

[Matt_Finish in reply to Hidden]

Thank you, Anne. Strange how the fat redistributes itself. It may be my imagination but I think my face, at least the bits not covered by my beard, is looking more full. At the same time, my watch with a ‘fixed’ metal bracelet now swings freely around my wrist.

Sight loss is absolutely my greatest fear. I shall certainly, given the information found on this site, do my best to resist too rapid tapering.

[Hidden in reply to Matt_Finish]

Good luck