Complicated GCA, no light at the end of the tunnel

[Vikinga]

Hello All, I was diagnosed with GCA on March 2024 following a 3.5 years with PMRA. My starting dose of prednisone was 60mg/day for 5 weeks. Tapering went relatively fine and reached 9 mg in September. Unfortunately I was hit by Covid 19 in September which caused long covid problems such as laryngitis, moderate branchial inflammation, acid reflux and lack of energy. I also had a severe chilling with no fever. My body could not control its temperature for about a few hours despite using warm pads. The chilling feeling was horrible.

After Covid 19, my CRP kept increasing but my incompetent Rheumy advised me to increase the prednisone following a schedule that I knew it was not going to work. My CRP reached 27 and I decided to increase the prednisone to 20mg/day for 5 weeks which reduced the CRP to 14.

I was pleased with that and I continued taking 20mg/day. However, last week I had another episode of severe chilling with no fever that lasted for 3 hours. Yesterday I had a blood test which indicated that my CRP was50.9

I have decreased muscle strength, low body mass and cannot increase my body weight, It has been 52 kg since August 2023, and have no noticeable muscles. Would this be the cause of hypothermia? of could hypothyroidism cause chilling with no fever?

I would appreciate any comment about this problem

Thanks

Vikinga

[DorsetLady PMRGCAuk volunteer]

could hypothyroidism cause chilling with no fever

Could do - as may other issues, including a hangover from C-19 see this - but you do need medical input

discover.hubpages.com/healt...

[Vikinga in reply to DorsetLady]

Thank you Dorset Lady, I read the articles with the conditions that can cause chills with no fever. I will discuss with my GP some of those possible causes of chills. I have an appointment with him on January 21st. Can hypothyroidism increase CRP so much?

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

To be honest I don’t know -CRP (and ESR) is unspecific -inflammation markers can be caused by many things. So that’s why all symptoms as well as markers need to be looked into… and it’s not always the obvious 🤦🏻‍♀️

[Vikinga in reply to DorsetLady]

Thank you Dorset Lady. I read the articles on chills without fever that you forwarded me, they are very interesting.

I have an appointment with my GP on the 21st and now I have information that I would like to discuss with him. He has admitted that he does not have any experience with long covid but at least he should know about hyphotyroidism. Could this condition increase CRP?

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

replied above

[SheffieldJane]

I have been diagnosed with long covid after a bout of Covid last January. It seems to take the form various episodes of Covid type symptoms and not feeling great otherwise. Fatigue, lack of energy, unwell feelings. I have been referred to a Long Covid clinic that is a combination of Face to Face, Zoom Calls, phone calls and sent information. It basically teaches you how to manage a chronic condition. eg Apparently Covid changes the way we breathe so good breathing is re-taught during seminars. I have had PMR followed by GCA /LVV for about 8-9 years. I think the diseases are probably in remission. I am on 4.5 mgs of Pred and get symptomatic if I try to reduce by even half a mg. I was struck by your description of the “chills”. This is an odd unpleasant symptom I get too. The Clinic makes me feel “managed” although it is clear that there are no easy solutions. There would be no harm in having your thyroid levels checked. I have long term Graves Disease and take Levothyroxine now.

I am under an Endocrinologist as well, who is monitoring the Adrenal function.

Do you feel supported by your doctors? I do but there doesn’t seem to be any great answers yet.

[Vikinga in reply to SheffieldJane]

Thank you SheffieldJane. I suspected the chills are part of Long Covid. I am terrified when they start. I had asked my GP about Long Covid symptoms but he said he was not aware of any symptoms and probably there was none. Not much support from him!

I will only discuss hypothyroidism with him.

I do not have a rheumatologist now, I had one that was useless. I have an appointment with a new one that is supposed to be very competent on July 7th

I do not know what I would do without the information I get from this wonderful Forum. The fact that you mention that you get those chills is invaluable for me, I am not the only one!

Thank you so much SheffieldJane

[SheffieldJane in reply to Vikinga]

You have been pretty unlucky with your doctors haven’t you? No wonder you feel alone and scared. You’ve got us and fingers crossed for the new Rheumatologist!

I have been incredibly helped by PMRPro and DorsetLady over the years and other selfless souls on here. What they don’t know isn’t worth knowing. The Covid Clinic has gathered all the known facts and things on the horizon, so it feels worthwhile. I am in Yorkshire, you may have one in your neck of the woods. The chills don’t scare me, it’s as if my thermostat has gone though. I am with my daughters and grandchildren in tropical Australia. I think it’s helping, or they are.

[ngchgc in reply to SheffieldJane]

Hi Jane, does the heat affect you and make your symptoms worse? Is it chills or shaking, each time I drop I get uncontrolled shaking, and feeling very unwell , However if I do light duties outside that can throw me over the edge too. Rhumy told me to drop 5mg every 2 weeks, now to hold for one month at 15mg, then drop again to 10 and hold... Gold Coast GCA sufferer.

[SnazzyD in reply to ngchgc]

Pred drops used to make me feel pretty rough even at higher doses. For a few days I had to keep lying down. 5mg every 2 weeks would have made me into a basket case. On 20mg and above I found general daily tasks etc difficult due to weakness and shakiness, higher the dose the worse it was. Above 30 or so, I felt like I had to do things in slow motion. At 3 months in on Pred, I felt the accumulation and what I called feeling very Preddy. Your history hasn’t helped you either with a lot of disruption for your body.

[ngchgc in reply to SnazzyD]

Thanks Snazzy, The feeling of shakiness really takes it's toll mentally and physical.

[Bluey-1 in reply to ngchgc]

It really does. My early days on high doses for GCA were pretty grim, really took its toll both mentally and physically. The insomnia was unbearable.

[ngchgc in reply to Bluey-1]

Yeah my Rhumy has me on 10mg at night, and I am awake from 1.30am each night!! Morning dose ATM is 20mg and he wants me down to 10mg by March! Saw the Rhumy on Tuesday and he told me to drop 5mg the next morning, so far this is worst I have felt, usually dropping 5mg I have problems 3 days after, not this time!

[DorsetLady PMRGCAuk volunteer in reply to ngchgc]

Couple of points.

With GCA I think it’s more sensible to take Pred in one dose, and preferably morning… and one reasons is that Pred does cause sleep issues, so taking it at night makes that worse. We do sometimes suggest splitting dose if you are having issues with it lasting 24 hours… but that a different issue altogether.

Second point, on higher dose for GCA most can reduce at 5mg at time [even 10mg] but once you get to the 20s and teens then it needs to smaller.. 5mg at 20mg is a 25% reduction - and much too much for body to cope with easily.

He may WANT you down to 10mg by March - but that may be pie in the sky- your GCA will decide - and the way he is approaching your tapering it’s likely to say ‘not a chance mate’ and cause a flare. Then all that does is increase your pred intake… bonkers.

I appreciate you have to try his way… but you also have to tell him it’s a not working. He probably won’t like that, but it’s you that is suffering.

[PMRpro Ambassador in reply to DorsetLady]

Just to say I agree with all DL has said. Your rheumy needs a reality check I think.

[ngchgc in reply to DorsetLady]

Yes I did experiment without taking it at night even at 5mg, if I don't take any I get a severe stabbing headache about 1am onwards, panadol or Nurofen won't touch it!

He did tell me on Tuesday everyone is different and results vary, and was surprised I still had not improved, and in some ways worse than before!

[DorsetLady PMRGCAuk volunteer in reply to ngchgc]

He is right in that everyone is different— so he needs to be treating YOUR GCA, not mine nor anyone’s else, nor what he thinks it should be doing…

[PMRpro Ambassador in reply to ngchgc]

What we suggest is 2/3 in the morning and the rest late enough to take the antiinflammatory effect through until the next morning dose is due. Often that is as early as midday which allows a better night's sleep than taking it in the evening, the peak is well past.

[Sophiestree]

I think you need other investigations not just your Rheumy. Write it all down beforehand so you don't miss anything.

[Vikinga in reply to Sophiestree]

Thank you Sophiestree. I will do that

Vikinga

[Pixix]

I’ve had those chills, & ended up in hospital, as my body just wasn’t coping. This is long before COVID or PMR. At the time, I was having gynae problems, & many infections, & it was the infections that caused the problem. I think, when ‘you’ have PMR it’s easy to try to link everything to PMR/GCA, when it may not be the case at all! This may not be rheumy ‘based’ at all. I would go to your GP…soon. Hope you find the cause & a solution!

[Vikinga in reply to Pixix]

Good advice Pixix. I will see my GP on January 21st. I was blaming GCA for the sudden CRP increase from 14 to 50.9 in a couple of weeks

Thanks!

Vikinga

[Pixix in reply to Vikinga]

Glad you’ve got an appointment. I have 12 diagnosed ‘diseases’, & it’s nearly impossible to think that something new may be that…something new, & not connected to any of the things I already have! But then I get another diagnosis…of something new! But it’s possible your increase is GCA…or something new…or something simple like a bug, germs, caught from somebody else…!

[Vikinga in reply to Pixix]

You are right Pixix!

Yesterday I got an appointment at the local hospital for a CT (thoracic), need to wait for an available date. Who knows what the CT will discover!

Vikinga

[Pixix in reply to Vikinga]

Hope all goes well for you!

[Vikinga in reply to Pixix]

Thank you so much Pixix!

Vikinga

[PMRpro Ambassador]

CRP and ESR aren't specific to GCA - the reason it is raised could be something completely different and it is seen in Covid and post-Covid. So is longerterm difficulty in body temperature control. Have you got a pulse oximeter? Do you know what your blood oxygen levels do during the chill episodes?

My husband was very underweight and was always cold - heating on full blast even in summer. Being underweight, a lack of sleep, and dehydration can all leave you chilly, but other possibilities, such as poor circulation, iron deficiency anemia, and hypothyroidism, are difficult to determine without getting the doctor involved.

Re your question about hypothyroidism and CRP - it depends on the CAUSE of hypothyroidism. If it is due to thyroiditis, CRP levels can get quite high and TSH levels very low.

pmc.ncbi.nlm.nih.gov/articl....

But you need proper medical advice.

nature.com/articles/s41380-...

By the way - did you mean "my CRP kept increasing but my incompetent Rheumy advised me to increase the prednisone following a schedule that I knew it was not going to work"

[Vikinga in reply to PMRpro]

Hi PMRpro

Yes I have a pulse oxymeter which usually shows 95 but after my chills shows 93-94.

My rheumy goes by the book when recommending prednisone. Increasing the prednisone to 20mg for only 2 weeks is not enough, it should have been 20mg for 4 weeks a least. With 20mg for 4 weeks, my CRP decreased but then in 2 weeks increased to 50.9

Other possibilities, such as poor circulation, and hypothyroidism, may be involved and I will see my GP on Jan, 21st.

Thanks PMRpro!

Vikinga