Sweating : Hello, I have PMR and GCA. I have had a... - PMRGCAuk

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Sweating

Plains profile image
58 Replies

Hello, I have PMR and GCA. I have had a problem with sweating over a year. Today it was 60 degrees and any little physical activity makes me sweat. Before being diagnosed, I never really sweated, even in warm weather. I have thyroid condition, my doctor says it’s not that. I mentioned it to my rheumatologist and he just said oh you have sweating.. ? I read that GCA can make you have night sweats, I am always hot. I keep my house temp at 62. Anyone else have this problem. It’s not menopause, I know what that feels like. This is different. Thank you

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Plains
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58 Replies
SheffieldJane profile image
SheffieldJane

it can be part of the symptom picture on the higher doses. Sweat used to roll down my face and drip on my grandson at Playgroup - embarrassing. At one point I used a scarf filled with special crystals I kept in the fridge to cool my neck or as a headband.

posthinking01 profile image
posthinking01 in reply to SheffieldJane

I had the same problem - so embarrassing and the face goes so red - I also bought one of those ice collars was so helpful. I have loads of cool scarves - thank goodness for them.

Chrisellie profile image
Chrisellie

Hi, yes I did as well. Started a good 6 months pre diagnosis. Happened during the day as well as night. Like you the menopause ended years and years and years earlier and was different.

It carried on through my PMR,GCA,LVV but did reduce after all treatment ended. I do still have a very little but much more manageable. No one seemed to know why for sure.

Try noticing if any food increases it, tomatoes etc.

Hope it improves.

posthinking01 profile image
posthinking01

Hi not sure what dose of thyroid meds you are on or what other medication you are taking but I had this really badly it was so debilitating but I found this was connected to my adrenal glands increasing my cortisol levels as they were unhappy - its a difficult one to get right - balance wise - perhaps you could let me know your meds and it may be that the meds are depleting your thyroid medication and the adrenals are having to take up the slack suppling you with the energy required now missing from thyroid gland function - out of interest have you suddenly had a problem with a painful knee or left hip ?

PMRpro profile image
PMRproAmbassador in reply to posthinking01

Have you seen softekcom's question below?

Plains profile image
Plains in reply to posthinking01

Thank you, I checked my meds, I take lossrtan, omeprazole,hydrochlorothiazide, rosuvastatin as well as prednisone and Actemera. Many years ago I took all my pills except the rosuvastatin in the morning. I found out omeprazole interferes with the thyroid medication. I now take it before I go to bed on an empty stomach .I take levothyroxine 0.075. I was taking more but the dr decided to lower it. When the doctor did the blood tests, one of the T reports was off, she was not worried because all the other tests were fine. I questioned her about it as they were never off before and that is when she said she thinks it is something else. I will have to look I my records to see if it was t-3 or t-4. I see her this month so this is one of the reasons I am asking the question. Thank you so much for responding. Much appreciated!

posthinking01 profile image
posthinking01 in reply to Plains

I would have a word with your GP as 0.075 mcg is a low dose of thyroid meds - if you can post your test results (you are able to request them) it can be seen what she is referring to as something is 'off' !

softekcom profile image
softekcom

What us the connection please ? Between painful knee + left hip and night sweats?

PMRpro profile image
PMRproAmbassador in reply to softekcom

Is this a reply to posthinking01? Did you click on the blue Reply box immediately under their comment? If you do that they get a notification of your question to know you would like a reply.

posthinking01 profile image
posthinking01 in reply to softekcom

All adrenal gland status - I am an Addison's patient and know when my knee just starts to tweak and my left hip and of course the sweats then the adrenals are not happy - there is a connection between the knee and the hips and pelvis as well. Will send details later if interested.

PMRpro profile image
PMRproAmbassador in reply to posthinking01

I'm fascinated - do tell!!!

posthinking01 profile image
posthinking01 in reply to PMRpro

I have proved this. It should also be noted that the Adrenal glands require and store the most Vitamin C than any other part of the body. I am a firm believer that scurvy the awful disease that caused so many deaths to sailors is due to lack of Vitamin C - was in fact an adrenal gland issue - as I too had scars that had started to widen and teeth loose etc. as my adrenals were grabbing all the vitamin C they could out of the body to keep me alive !

Dr. Goodheart identified five specific skeletal muscles which are related to adrenal gland function. These are

1) sartorius,

2) gracilis,

3) posterior tibialis,

4) gastrocnemius,

and 5) soleus.

There will be weakness in one or more of these muscles when the adrenal glands are malfunctioning. Because of the attachments of the sartorius and gracilis on the pelvis, (Sartorius anterior superior iliac spine; gracilis pubic ramus), their weakness in persons with adrenal stress problems may allow the sacroiliac joint to subluxate posteriorly. The sartorius and gracilis stabilize the innominate (one side of the pelvis), holding it in an anterior direction. Many persons with hypoadrenia seek chiropractic help for the care of sacroiliac pain and/or low back pain which is due to the lack of pelvic stabilization normally provided by these muscles.

The sartorius and gracilis have a common insertion (along with the semi tendinosis) on the medial side of the knee and rotate the tibia medially on the femur. When weakness of these muscles occurs, there is a loss of stability on the medial side of the knee. The sartorius and gracilis (along with the semitendinosis) act as dynamic ligaments, protecting and supporting the medial knee joint during various ranges of motion. Their function is particularly important in situations where the knee ligaments alone offer inadequate support.

It is very important to check for hypoadrenia in any person with knee problems. One can see how one hypoadrenic person will present with knee problems and another with back problems, and some persons will have both.

Due to the relationship of the posterior tibialis, gastrocnemius, and soleus to the stability of the foot and ankle, many hypoadrenic persons will complain of symptoms of tired feet, weak ankles, or aching calves. The posterior tibialis holds up the medial longitudinal arch of the foot, especially during gait. In some persons exhibiting hypoadrenia-related weakness of the posterior tibialis, the medial arch will drop, causing a pronation problem and strain to the foot and ankle.

The one common factor in persons with the above-mentioned musculoskeletal complaints will be the weakness of one or more of the five adrenal gland related muscles accompanied by improvement of their symptoms following treatment of the adrenal glands.

Hope this helps ?

A

PMRpro profile image
PMRproAmbassador in reply to posthinking01

Thanks - one of our local GPs is also a kinesiologist, I worked with him on the translation of a research project. Was interesting ...

posthinking01 profile image
posthinking01 in reply to PMRpro

I went to see a very famous kinesiologist in London who was to advise me about the multiple mercury fillings I had in my teeth (and I mean multiple every tooth that could be filled had about 3 lots of mercury in those teeth) - my dentist asked me to go to see him - it was a private appointment - he was so accurate - he asked me to put my hand out and put a lump of something in my hand - I couldn't see what it was - nothing happened my hand just stayed motionless - he said OK then and took it out of my hand - he did his several times with different items - all of a sudden he put something else in my hand - once again I didn't know what it was - and my hand pulled back alarmingly - he said agh ha - that was mercury and your body does not want it in your mouth that is for sure - and might I add he said - I cannot understand with that much of mercury in your mouth your skeletal system has not collapsed - blow me down about 6 months later - it did - I was dislocating - clavical - pelvis etc. etc. - my dentist then agreed to take out all the mercury fillings even though after a visit to the dental hospital in London they advised me against it because my cavities (thyroid tooth problems) were so deep they would need the stability/hardness of amalgam fillings - I still went ahead - but was so ill each time they were taken out - it took two years to finally get them changed to white fillings - white fillings in those days were softer but not know they are really hard wearing. I had all the tests for Lupus go negative on getting the mercury filling removed and it was considered that these were causing me problems. My health improved but not entirely because down the road my Lupus was also connected to the thyroid gland and that was a long drawn out issue - I still have Lupus but as long as the thyroid is kept happy and the adrenals I manage my symptoms - apart from the sunshine issue which is dreadful. Hope you find this of interest?

posthinking01 profile image
posthinking01 in reply to PMRpro

Just re-read this - wow it is an amazing science - he will probably know the man I went to see who is unfortunately no longer with us and wrote books on the subject.

Content1 profile image
Content1

Hi, I'm just starting to have this problem, I'm throwing windows open and hubby's grabbing a blanket! I'm on 12.5 prednisolone for PMRGCA and 200 mg Levothyroxine following total thyroidectomy 15 yrs ago. I'm wondering why this has suddenly started happening.

Plains profile image
Plains in reply to Content1

Thank you, I had it when I was on a high dose too.

posthinking01 profile image
posthinking01 in reply to Content1

May be some drugs you are taking are 'depleting' the thyroid hormone which you need as you do not have one at all. If you can list them there is a drugs interaction checker I can use to see if there is a problem if you so wish.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to posthinking01

We have a link in the FAQs -

healthunlocked.com/pmrgcauk...

Plains profile image
Plains in reply to DorsetLady

Thank you but I can’t open the pages.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Plains

Try this - the others are UK -sorry forgot that .

webmd.com/interaction-check...

Plains profile image
Plains in reply to DorsetLady

It say I have to join but I don’t fit the categories to do so.

PMRpro profile image
PMRproAmbassador in reply to Plains

Can't remember what I chose - is student an option? If not, researcher usually fits the bill ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Plains

Not sure what you mean? What says have to join? The forum? If you can reply to posts you must have joined..

or do you mean the external links.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I assumed webmd

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Maybe - never had an issue

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I think it was something new. I had to do something after my entire computer had to be wiped - never had to originally.

PMRpro profile image
PMRproAmbassador

It really is a common complaint from many. It has always been part of my PMR. I suppose it may be more likely if your PMR is actually due to LVV (large vessel vasculitis) but it hasn't been recognised and it is known to happen in GCA. I also find physical activity makes it worse - even at temps well below 60F/15C and I have become quite sensitive to higher temps.

Kendrew profile image
Kendrew in reply to PMRpro

I've experienced sweating and hot flushes throughout my time since diagnosis. Not necessarily on a daily basis but certainly several times a week and they're more prevalent during the night. (Haha! Before David and I decided to have separate bedrooms, he said it was like sleeping next to a tumble dryer as I turned over & over, throwing duvet off and on constantly!)Higher temperatures, activity, and even eating a meal can sometimes bring an episode on. Thankfully, mine don't trouble me enough to warrant any kind of intervention.

Plains profile image
Plains in reply to PMRpro

Thank you , I will ask about LVV.

Anna135 profile image
Anna135

It's a common side effect of steroids. My GCA and PMR are well in remission now, but I still have adrenal insufficiency from the years of treatment. On days that I have to updose for my adrenals, I am noticeably much sweatier.

posthinking01 profile image
posthinking01 in reply to Anna135

As someone who has adrenal insufficiency - updosing should stop any sweating as it should take down the need for the body to produce cortisol via another route - is it something else like a drug you are on perhaps ?

Plains profile image
Plains in reply to posthinking01

I hate to go up with prednisone just to get rid of sweats. I don’t have really any other problems right now.

posthinking01 profile image
posthinking01 in reply to Plains

I am not on Pred I am on methyl prednisolone - I was prescribed this in Belgium where I was told the whole of Europe does not use Pred at all - hence methyl - it was difficult when I first tried to get it prescribed in the UK as it was an unusual steroid to use - but now it is used quite extensively - it is easier on the liver apparently !

PMRpro profile image
PMRproAmbassador in reply to posthinking01

"I was prescribed this in Belgium where I was told the whole of Europe does not use Pred at all"

Not true at all. I live in northern Italy where both prednislone and prednisone are used. I did have a short period on methyl pred - it was awful, didn't control the symptoms as well and I developed awful adverse effects. Weight gain I'd never had before and a lovely black beard!!

posthinking01 profile image
posthinking01 in reply to PMRpro

My error I meant Belgium does not use ! Suits me great though !

posthinking01 profile image
posthinking01 in reply to PMRpro

Agh on re- reading - I did have adrenal insufficiency as opposed to just using for inflammation issues etc. - I did not have any side effects as I suppose as someone once said you are only putting back what you are deficient in ! It is stronger than pred though !

Plains profile image
Plains in reply to PMRpro

I don’t think I want to try that!

posthinking01 profile image
posthinking01 in reply to Plains

Try taking a good quality Vitamin C tablet which helps the adrenals !

Anna135 profile image
Anna135 in reply to posthinking01

No, definitely not another med. I think you're perhaps assuming that updosing is some kind of exact science, which it is far from, so you often end up with more than your body needs when you have to stress dose. Sweating is a also very well known side effect of steroids, and after 10 years on various doses, one that I've become well acquainted with. I was very sick with GCA in the beginning but had no daytime sweating until I went on prednisone.

If you google steroids and sweating you will see how well known the side effect is.

Google search of sweating and steroids
posthinking01 profile image
posthinking01 in reply to Anna135

Hi I am well aware of steroid use - I have Addison’s as well as everything else - but Vitamin C is not really another drug IMO but helps have less steroid.

singingloud profile image
singingloud

What dosage of prednisone are you on now? I had to up my dose to 15mg for ten days and my sweats came back but now on 11mg and they have calmed down especially at night.

Plains profile image
Plains in reply to singingloud

I am only on 6mg

sidra1968 profile image
sidra1968

Yep, I also keep my house at 63 and sweat a lot with little exertion. For me I think it's a combo of just how I am and always was, plus the high-ish dose of pred.

Pixix profile image
Pixix

Yes! I pour with sweat…it’s like turning tap/faucet on! It’s bad every day & it’s cold here in England for Spring. I get dehydrated, too, so need to be careful. On a bad day I wear a towel round my shoulders. It’s gross!! Before this I was a definite ‘no sweat’ person. House is kept cool, but I still sweat like mad. My Dr is contemplating & thinking…I had a one hour meeting with him, & this was a one sentence bit, so a reply may take a while! I suffer from Polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration, Plantar Fasciitis, so it could be any of those (some highly unlikely!) & could be drug related, as I take quite a few! If I ever find a solution or medical answer I will post it!! Very embarrassing when your hair is soaking wet, it’s dripping off your nose & into your eyes & you meet somebody in the street!!

Plains profile image
Plains in reply to Pixix

Thank you for responding.

posthinking01 profile image
posthinking01 in reply to Pixix

Hi you really need to check the side effects of your medication because this could be putting your body under strain - your kidneys or thyroid or adrenal glands could be under strain - this would make you run on adrenaline which can cause profuse sweating.

Anna135 profile image
Anna135 in reply to posthinking01

Profuse sweating is a side effect of glucocorticoid steroids which we take for GCA and PMR.

Pixix profile image
Pixix in reply to posthinking01

Sweating is a side effect of pred. It started, for me, one month after being diagnosed, & never truly went away. I am in midst of trying 3 drugs atm, & my Dr is well aware of what I’m taking. I started them individually, not all at the same time. Since I tapered below 5 mg sweating seems, to be a sign, for me, that my PMR isn’t under control, & that I’m overdoing it. The last two weeks we have been moving furniture away from walls, cleaning behind etc, & emptying bookcases etc as a decorator arrives this morning to paint 3 rooms, as I’ve become allergic to paint. We have moved out & are in our motorhome in the forest where we live. I pulled a muscle in my back, so it was hard. Now we are having an easy week away. I had blood tests on Friday, & 3 out of 5 came back “abnormal, see your Dr”, & I think it’s kidneys that are unhappy. Need to read up which bits are outside the parameters…! I have been under a kidney specialist…about 25 years ago…& hospitalised with pyelonephritis.

Content1 profile image
Content1 in reply to Pixix

Oh my goodness, what a lot you have to cope with. I want to give you a hug, very gentle of course!

Pixix profile image
Pixix in reply to Content1

Ver py kind of you, thanks for the hug. I’m sending one back to you, too! S x

RachelJDH profile image
RachelJDH

Hi, I too experienced sweating after being on pred for a year. I believe it is one of the side effects of prednisolone. I am finally holding steady at 10.5mg and the sweating has subsided a bit. I have however put on weight since starting on these drugs in 2021 and my metabolism has definitely changed and I also wonder if that also influences these things. Still I am hopeful that it will all improve as I reduce doses. I have learnt to my cost that you just can't hurry polymyalgia (love 🎶) you just have to ...

PMRpro profile image
PMRproAmbassador in reply to RachelJDH

Have you cut your carbs to help with weight control while on pred? We do recommend it and it is mostly very successful. Pred triggers the release of glucose from the body stores - and together with the resultant excess of insulin that leads to fat being deposited in particular places - and weight gain. It can be mitigated.

posthinking01 profile image
posthinking01 in reply to PMRpro

That's something I didn't know thanks - about the glucose etc.

RachelJDH profile image
RachelJDH in reply to PMRpro

Hi, yes I have but I left it a bit late thinking "I've got this". Even with being really strict on carbs which I do find depressing as I used to be able to eat anything, weight reduction is not the result although it does keep weight in a holding pattern. What is really annoying is that my husband has lost weight! I will persevere tho and hope as I do slowly reduce dosage my body might begin to revert to my normal. I find it important to me to believe there will be life after polymyalgia. Even managing to reduce my dose by 1/2 mg has been a victory. Thank you for your support. X

PMRpro profile image
PMRproAmbassador in reply to RachelJDH

I have a life WITH PMR! It isn't that bad!

Have you tried keeping a diary? Things do creep in - fruit for example! Snazzy and I had to get very low - positively keto - to loose weight.

RachelJDH profile image
RachelJDH in reply to PMRpro

@You are right. I do need to be reminded of this. Tiredness is my big enemy. I do now have sleep apnea - not helped by the weight and am wrestling with the night-time machinery. I am going to work hard at cutting the carbs and am feeling much more positive since having my cataracts sorted. Unfortunately I thought my hair was blonde and now I see it is silver. What a disappointment 😅

PMRpro profile image
PMRproAmbassador in reply to RachelJDH

I have lovely silver hair - and get loads of compliments. Very on trend these days!

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