Confused

[Noosat]

Confused

Can PMR cause body chills. I have the temperature in the house at 72 degrees, but I am constantly becoming chilled. I am on 5mg of prednisone, but upped that to 7 yesterday as I thik I am having a small flare up in my thighs, Noosat

[Hidden]

Before l was diagnosed & started Prednisolone, l was perpetually cold & could never get warm.

Unfortunately, it’s now the other way around, too hot!

[Blearyeyed]

If the chill didn't come on very suddenly which can be a sign of an infection , the ' Chills' is a common symptom of any body with a condition that affects your Adrenal function.

At 5 mg you were heading into the transition period when the Steroid isn't keeping your Adrenal / Cortisol level at a high enough point to react to temperature changes but your Adrenal Gland hasn't started to begin the role again that steroids had been doing in your body.

The Adrenals help regulate temperature control via changing the level that your Autonomic Nervous System functions. The ANS is in charge of temperature regulation , rest and digestion , fight or flight response to Enviroment or Infection among other things.

This is why when you take higher doses of steroids your ANS can cause you palpitations , sleeplessness , slowing of digestion or diarrhea , sweats , flushing and overheating , breathlessness and over alertness.

When the dose becomes low and your Adrenal Function isn't back to normal you can get chills from change in temperature or an inability to sweat when too hot , Fatigue , poor digestion , sleepiness and brain fog and slow circulation .

The lower doses can also bring Pain that does not come from PMR but was from Nerve or Muscle Fatigue issues brought on by unusual activity , over activity or Stress . These things may have been present at higher doses but we're being masked by the use of Steroids .It's always a good idea to try rest , heat or ice dependent on which gives relief for your pain and try standard dose daily of Paracetamol and a magnesium or joint relief cream for a few days to see if it does improve your symptoms before an increase in Pred .

If the Pain does not improve or worsens then it is more likely to be a PMR Flare and a short period of a higher dose can help , and then you can do a quicker taper over a few days to the lower dose you were on , or a dose in-between which keeps your symptoms under control.

[Megams in reply to Blearyeyed]

~Hi Blearyeyed - what an interesting reply to Noosat's question & thank you so much as always - I want to print this off & take to Rheumy whenever I get my next appointment but not sure how to do this.

I experience reasonably frequent chills & guard against as such as carefully as possible.

It's almost as if I could be coming down with "another upper respiratory virus" - an apparent "theme" on this 5 year PMR journey with steroids.

I always put it down to the fact that I have a propensity to respiratory issues but magnified since being on steroids?

I too am at the equivalent dose of 4.5mg/5mg (pred) with my hydrocortisone.

I have a hypothyroid, take Synthyroid - due for bloods this months but has been checked 3 months ago & considered OK.

I crave cacao/carob milky drinks when I feel my brain needs boosting + my Dilmah tea - almost as if my adrenals help - been like this today & felt dreadful so I just don't know................

[PMRpro Ambassador in reply to Megams]

You can print screen or you can block and copy and paste it into a file if you are using a computer.

[Megams in reply to PMRpro]

~Excellent PMRpro - done

[Blearyeyed in reply to Megams]

You Thyroid issues will also have an affect on these types of symptoms as it can play a part in changing the speed at which your Nervous system and circulation responds to change.

It's why it's important , especially when you get to doses when your Adrenal Function should be returning that you have your thyroid function monitored too , as you need to be sure which if your Health issues your symptoms are coming from , Thyroid as you know from experience causes similar symptoms to Adrenal issues.

It can make a difference to your speed of recovery or your speed of tapering if you realise that it may be that you require more assistance with your Thyroid Control to prevent triggering more severe side effects instead.

PMR pain and symptoms are PMR , so do need an increase in Pred . Other symptoms like Fatigue , Muscle Pain , Neuropathy , Stiffness , Temperature , Digestion , Coordination and Headaches can come from anyone of the other Health issues a Patient experiences or from the need be more proactive in doseage of all of your treatments whilst going through a big body change caused by removing the effect of one , especially steroids or Opioids.

[Megams in reply to Blearyeyed]

~Thanks Bleary so much - I need to keep re-reading your post as I find it difficult to try & comprehend + articulate when piecing together all the various differing symptoms I experience at times.

Because life has tended to be dominated by med appts over the years I'm inclined to tell myself that tomorrow will be better

As for thyroid - Dr's here so overworked (probably same worldwide) that I heard a Dr say on radio recently that unless there is a red asterisk beside blood results they are merely quickly glanced at as far too busy.

[Blearyeyed in reply to Megams]

You may find PMR Newbies more detailed explanation of interest too it has now been added to the replies on this post and includes more of the mechanics of the full H/ P/ A axis and its effects on your system than my simplified version.

[Megams in reply to Blearyeyed]

~Thanks again Bleary as always - have just found the thread which I am re-reading again & again just like yours - every little bit of information is always enormous help with trying to get a grip on the understanding front - so complex ~ xx

[Noosat in reply to Blearyeyed]

Thanks. This is a great help.

[Dee02 in reply to Blearyeyed]

Hi Blearyeyed, thank you so much for your detailed answer, you have certainly made things a lot clearer for me, and now I understand why I am getting all those symptoms.

[PMRpro Ambassador]

PMR made me feel hot but at one point when I got to well under 10mg I had a couple of winters where I felt cool in the house - needed to wear socks and sweaters again! Then I had a flare and have been at higher doses again and the coolness "problem" has gone.

[dillydally1]

hi, I was always cold before prednisolone, now I am really hot all the time xx

[polymy in reply to dillydally1]

Me too. People complain that my heating isn’t high enough. Family think I’m saving money by not spending on heating. Rubbish!!! I’m just too hot on pred.

[Whitner]

Interesting posts! I was hot before I went on prednisone and now I am chilled most of the time which could be because of inactivity but I feel particularly cold in my thighs which I thought was because of poor circulation as a result of PMR. It is also winter here so.....

[PMRnewbie2017]

Whilst Blearyeyed's reply is full of detail I should like to take issue with some of the content. I have checked the accuracy of what I'm about to write and if anyone out there disagrees then I would like to hear from them.

Body core temperature control is a very complex physiological system that is chiefly controlled by a specific region in the Hypothalamus. To say that it is because of suppressed adrenal function is not strictly accurate. So whilst it is correct to say that the ANS controls body temperature this oversimplifies the true picture and focusses perhaps too much on the adrenals. Whilst I might agree that a lack of endogenous cortisol could influence the body's thermoregulatory homeostatic abilities, it is because long term corticosteroid use has suppressed the whole HPA axis and it is the disruption of hypothalamic activity that is the major contributor.

In order to make things easier to understand for the majority of the readers on this forum, those of us with medical knowledge tend to simplify our postings. The trouble with doing this is things get distorted in the telling. For this reason I would caution Megams from printing the reply for her consultant because it is possible that it would not be well received.

We talk a lot about the need for "the adrenals to wake up" but this does not tell the true picture. The adrenal glands have 2 parts: the cortex and the medulla. The hormones produced by the cortex are absolutely essential to life. Those of the medulla (adrenaline and noradrenaline), whilst having an important role are not absolutely essential. The medulla hormones control the sympathetic nervous system (the fight and flight response).

When we are approaching the 7mg pred level and below we have to go through considerable physiological adjustments. The hypothalamus, the pituitary and the adrenal cortex must start producing their hormones again, but these hormone need to be produced in the correct amounts at the correct time. The complex positive and negative feedback mechanisms that control this "orchestra" of hormones have to re-establish themselves.

It is my belief that this is why many of us struggle around 5mg to 3mg. It is so tempting to assume that a flare is developing and increase the Pred dose. I have done this several times but with experience have learned that I am not doing myself any favours. A blood test for ESR and CRP have shown my markers are 6 and 5 respectively so I haven't been flaring. I've just been feeling awful because my body is struggling to re-establish its balance. I rode it out with the help of paracetamol and ibuprofen. Now at 3mg/2.5mg I feel normal again apart from unpredictable episodes of chills or sweats.

Our bodies are designed to respond to stressors. Our homeostatic systems will kick into action (providing of course that they haven't been completely ablated by long term high dose steroid use). We just have to give them a chance by not reaching for the Pred too quickly.

[SusanEleven in reply to PMRnewbie2017]

I’m not flaring either and have episodes of chills or feeling heated all the time. My endocrinologist also mentioned the hypothalamus/pituitary/adrenal axis. I’m at 2.5 mg of pred after 4 years. Brain fog is a real issue. I hope that in time my temperature will stop zigging and zagging and I’ll feel less mentally fuzzy. I’ve also noticed digestive issues I’ve never had before.

[Noosat in reply to SusanEleven]

What kind of digestive issues?

[Blearyeyed in reply to PMRnewbie2017]

Yes I agree with your full assessment and we both concur on the point that often the Pain and Fatigue at lower levels of Pred especially after long term use of steroids can be caused by things other than PMR symptoms.

As you say , it does include a trinity of systems trying to return to efficient responses , even though it may be the adrenal system at this point in treatment that is going through the greatest transition to reach full functioning levels , and which may have a greater impact at that point in treatment in the regulation of the Autonomic , Sympathetic and Parasympathetic nervous system , and how rapidly this can respond appropriately to enviromental change or function effectively in its part in the HPA axis.

My efforts above were to try and explain the processes that are going on in the simplest way possible , and concentrated at this point on the adrenal effects , as to give a full explanation of the Dysautonomic activity can be quite long , baffling and complex even for people with a thorough Medical Knowledge.

Thank you for including the extra information on these processes as I'm sure people will find it helpful to have a more detailed explanation as well.

[BoaterAnnie]

Yes, I often get chills with my PMR. I discovered by taking my temperature that when this happens I have a low grade fever. But I know it is PMR because all my other symptoms act up at the same time and go away together. I believe a low grade fever is a common symptom.

[Noosat in reply to BoaterAnnie]

Thank you. In retrospect I think this could be the cause. I had an upset with gastric ulcer, which does not need medical care as it will heal itself. My whole system has probably been upset. Also in the last couple of months I have pushed harder with physical activity. I plan the next week, or longer, to just take it easy one day at a time. Hope it is warm where you are. Sunny here, but cold with wind.

[BoaterAnnie in reply to Noosat]

I have found that if I have any other medical issues going on it seems to put my PMR on high alert. Like you say, my whole system gets upset.

I'm in southern California now and it was the coldest December we've had down here since we've been coming down the last 9 years. It's starting to get nicer now and we're hoping for 18 celsius today. But some days are really windy. I have that dry eye thing and I've come to really dislike wind!

[Noosat in reply to BoaterAnnie]

I live in the "hill country" of Texas. Cold weather came early this year, especially the nights. We've already had many nights below freezing. Of course we get nice, sunny days in the 60s and a couple of low 70s, much of the time. The weather, also, seems to have an affect on how I feel. Although I am not a person who allows herself to be depressed. Right now we are dealing with pollen from the ash juniper (people call it cedar fever) Usually I do not attribute all ills to PMR, as I do have other issues, however, pain in my thighs is a sure warning. I'm gradually coming to the suspicion that part of the problem is overworking already injured muscles in exercising.