PET/CT scan and horrific increase in PMR pain

[Microbe1943]

I had PET/CT for reasons other than PMR on Friday. SAT, Sun, Mon, Tues, Weds, Thurs so far following this PMR is awful. Screaming muscles...stiffness shoulders, neck, outer upper arms, hips (much of this also in middle of night). PMR started 2 weeks after 2nd Moderna (end of Feb 2021). Diagnosed in July with elevated sed rate. It is now still 72. For a time the CRP was elevated (not at first) to 47. It is normal now. Starting dose in July of prednisone was 10 mg. It was magic. Most pain gone overnight. I was able to get up from a seated position, reach for a dish in the cabinet, dress without great distress. After PET last week my rheumatologist (weekend stand in for her) raised dose to 10 mg. ON that now 5 days. I speak with Rheumatologist on telemedicine today. I am NOT back to baseline at all even with the 10mg. The steroids wreck havoc with my diabetes (insulin dependent). I eat LOW carb diet. I cannot exercise like to talk walks, etc.

I must get another PET/CT with a different trace (looking for Neuroendocrine tumors) and it will be 40 min again lying on back and still. I never lie on back. Very difficult. What might I do to prevent the huge what I assume is a flare?

Thanks to all you contribute here. I read every day and occasionally post.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your PMR flaring, this post gives advice on what action to take - healthunlocked.com/pmrgcauk...

You may need to give the 10mg a bit longer to work, if if doesn’t then unfortunately you may need to go higher….12.5mg or even 15mg.

I appreciate Pred is not helping your diabetes and it’s a balancing act, but if you are in a lot of pain it needs sorting.

Do you know when your next procedure is likely to be? Hopefully you will have got over this flare, and you may find that painkillers help - but please discuss beforehand with technician/nurse whoever us doing it and explain the issues she you had this time.

[Microbe1943 in reply to DorsetLady]

Thank you for your quick response! Next PET/CT is February 9. I meet with Rheumy today online I will talk about what I might do to "prevent" such a flare again. Not sure it is possible but we will see. I don't take pain meds...don't have any. I do have Ativan if needed. I take 0.25 so I can sleep through night easier. HOlding the muscles in one constant rigid position is terrible for the PMR for me, probably for all of us. Thanks for the suggestion I might need a few more days on the 10 mg. Will discuss with Rheumy and will come back and post her response in case it might help others in a similar flare situation. Thanks so much!

[DorsetLady PMRGCAuk volunteer in reply to Microbe1943]

Painkiller - paracetamol to us in UK, to you Tylenol I think…might be worth considering….

[Microbe1943 in reply to DorsetLady]

Oh yes, I use ES Tylenol. Will take before test. Didn't last time.

[DorsetLady PMRGCAuk volunteer in reply to Microbe1943]

Always worth a try, even if it just takes the edge off …

[Microbe1943 in reply to DorsetLady]

I am returning to check in re my pretty horrific flare (I think that is what it is) from being in the PET/CT scanner for 40 min on my back with arms raised above head...(really impossible so did what I could). When I last wrote it was 2 weeks ago. I called my Rheumy on a weekend saying I was pretty agonized and I went up from 8 mg (tapered from 10 mg that started in July and overnight stopped the PMR pain everywhere) back to 10 mg. I have been on that about a week. It is NOT returned me to the no pain place at all but the symptoms are my back and shoulder muscles...not the hips, and I can turn over easily in bed and get up from a chair easily. I could NOT do this pre-steroids. After 1 week of what i feel is about an 8/10 pain level from the back muscles (using Icy Hot, Tiger Balm, heat) I am at my wits end. Too much pain and I have had Stage IV pancreatic cancer and horrific treatment (I am now clear 6 years!) so I am not a stranger to pain and cope decently. TYLENOL doesn't do anything for the back muscle issue. Ativan low dose at night allows me to sleep.

I just read the post about tapering and also going up from you Dorset Lady. It is great really. Do you have thoughts about going up say to 13 mg for some days then going back to the 10 mg? HOW long do I increase the dose and stay on it...then drop back to 10 mg? My diabetes is difficult so I don't want to take more prednisone than necessary. Just trying to find my way here. Any thoughts you have are welcome.

Soon I will need to be in a CT machine for 30 mins...and a week later a PET/CT for 40 min. DREADING IT for the flare or whatever this is that got kicked off...and again, Tylenol ES is totally ineffective.

I'm very tough and last night I cried. I feel so trapped in pain.

I cannot possibly do any "exercise" as I am lucky to get around the house and fix some of my own meals. Thanks for all your accumulated wisdom (all of this group).

[PMRpro Ambassador in reply to Microbe1943]

Have you any access to a physio who offers manual mobilisation of myofascial trigger points? That is what your back and shoulder muscles sound like. My back and shoulder muscles were as hard as bricks.

I have had physio that really digs it out - but the best option I have access to is a technique called needling (quaddeln in German) where they do subcutaneous injections of various solutions just under the skin which is said to stimulate the underlying muscle and they relax. I had been having it in the Pain Clinic until Covid put the mockers on that but my rheumy also does it and I had a session a few weeks ago during my appointment with him - the difference is amazing, I can FEEL how much looser I am when walking. They do it using steroids, lignocaine and even saline, there is also a dry version. Obviously lignocaine gives some immediate relief but all versions work for most patients. It hurts like hell while it is being done but there aren't many patients who aren't queuing up for another session as it really does work.

I did find a sports physio practice in East Anglia who offer it but it is rare - the manual stimulation is probably easier to find.

[Microbe1943 in reply to PMRpro]

Thank you for offering what helps you. Any manipulation of my muscles truly exacerbates the issues. I had a 10 minute chair massage that felt good while it was underway but for 3 days AFTERWARD this same kind of distress. My SED rate has been as high as 100 of late. I am sure I have the autoimmune situation that PMR is. I will try some accupuncture next week when I can get an appt! Thanks

[PMRpro Ambassador in reply to Microbe1943]

I also have "flares" with the manual version - especially if the operator is too enthusiastic. The best version I had was using "mud packs" first to soften up the muscles before he worked on them. It releases the cytokines from the trigger points - in myofascial pain syndrome they are trapped in inflamed and hardened muscle fibres that you can actually feel in the muscle but the manipulation releases them so they become systemic and it feels like PMR flaring until they are washed out of the system which can take 2 or 3 days.

[Microbe1943 in reply to PMRpro]

Pretty interesting! I am going to talk with my good friend who lives far away from me but who is a functional medicine osteopathic physician about your experience the cytokine release. I have no idea where a person is around where I am right now in the US that would do the mud pack treatment then manipulation. Sounds pretty tempting!

[PMRpro Ambassador in reply to Microbe1943]

The physio was a little Greek guy who acted as physio for the local football team. The packs were big - reached from shoulders to thighs with enough overlap for the corners to almost meet on your chest. They were laid on a large sheet on top of blankets and the sheet was used to mould it to your body and then you were wrapped up like a mummy with the blankets and left to poach nicely. I used to go to sleep - it was wonderful!!! That alone helped - but by the time he'd finished I could actually move!

[Microbe1943 in reply to PMRpro]

Wow! I know my accupuncturist here in CT who I saw throughout my cancer treatment of 2 years actually does heat the table and uses infra red light and blankets and she does gentle massage AFTER all the million needles. The friend I spoke about who is a DO told me to go back to her for some help also. Along with raising the steroids to 13 mg for some days. Thanks again!

[DorsetLady PMRGCAuk volunteer in reply to Microbe1943]

Could try 13mg for 5-7 days and then back to 10mg ( it’s ok to go up for 2 weeks and then drop back down without an issue, but understand you probably don’t want to stay at higher dose that long). As suggested by PMRpro, please discuss with medical team beforehand and explain your situation, they may be able to offer some relief during actual procedure, which might have a knock on effect on the after effects.

Fingers crossed for both procedures.

[Microbe1943 in reply to DorsetLady]

Very helpful Since it is the weekend I won't try to reach my Rheumatologist...I think I will try 3 days or so and IF I feel much better, I will contact her and tell her this and let her weigh in on how long to stay at 13 mg. If it doesn't help, I will also call her. Thank you so much.

[PMRpro Ambassador]

Nothing much you can do if it is PMR except more pred. Unless your rheumy will try methotrexate or leflunomide to see if they will allow you to get more out of the pred.

But it might be worth speaking to the medical team to find out if they have any light sedation that they could use to make the process more comfortable, or at least, theat you won't be as aware/remember it.

[Microbe1943 in reply to PMRpro]

THANKS. Im thinking I may use some Ativan which I normally take in a 0.25 dose at bed time. may take a bigger dose an hour before going into the maching. It could help. Will ask about it with my rheumy today. And, yes, pillow under knee i did have. Still a mess afterward!

[mgrogers99 in reply to Microbe1943]

If you take the Ativan you should have someone drive you home!

[Microbe1943 in reply to mgrogers99]

Yes. Hubby will.

[mgrogers99 in reply to Microbe1943]

Good!

[Longtimer]

I have OA in base of spine, and lying on my back for that amount of time would be difficult!...but when I had a scan which was 25 mins I asked for a pillow under back of knees...it helped a great deal....

[Microbe1943 in reply to Longtimer]

Yes, I did have a knee pillow and it made me more comfortable but it did not at all prevent the boomerang PRM flare.

[PMRpro Ambassador in reply to Microbe1943]

The only thing that will prevent the flare will be more pred - and that has its own problems for you.

[Microbe1943]

Maybe i can take extra prednisone fir a couple of days. Will ask rheumatica tiday

[2013mayo]

Oh poor you, Sorry you are going through this pain, back problems are terrible, I’d take a higher dose of pred for a few days and if that doesn’t work try high strength pain killer just to get you over the worst.

Hope it all goes well.

[Nightingales]

This is just an uneducated thought but did you have an injection with your scan. Could it be a reaction to that? It would probably be worth mentioning it to the radiographers and maybe an antihistamine might help. As I said, I don’t know what the side effects of the contrast material could be. Good luck.

[Microbe1943 in reply to Nightingales]

Good thgt but no contrast injection gives. A radioactive glucose tracer injection but that’s it. Good thgt tho. Thank yiu!!!