Advice please

[New50]

For the past few months I get like an internal shivering, I’m on Sulfasalazine and prednisolone. Does anyone have the same or any ideas what it could be. Thank you

[FRreedman]

Very occasionally.... it's like a nervousness feeling, but I don't feel nervous about anything.

[Dobcross1]

Hi, yes I get a feeling like my blood is running cold right through me. Horrible when it happens!

[Mmrr]

Yes, I can feel quite chilled and shivery at times. It can be quite disconcerting, I'm experiencing it more on baricitinib.

I also tend to get it when I'm not feeling so well.

[Agoodlife in reply to Mmrr]

Have you checked your thyroid function lately?

[Mmrr in reply to Agoodlife]

It has been checked several times and I did a full private check too. I'm convinced its RD.

[Agoodlife in reply to Mmrr]

What is your temp and pulse?

[Mmrr in reply to Agoodlife]

All good, I don't have an infection.

It's the RD that causes my issues. I'm confident of that.

[Agoodlife in reply to Mmrr]

I am actually talking about your normal basal temp and pulse, not an infection. If your normal temp in the morning and afternoon is below 36c and pulse low. It means that your temp regulation is affected. Your thyroid regulates your temp, but needs support from other metabolic functions, mainly your glucose supply from your liver that supports hormones that regulates the thyroid.

[Mmrr in reply to Agoodlife]

My resting pulse is 60-80 depending on how well I am. Lower when well, higher when flaring.

It is high when I move, that's probably due to carrying weight I don't normally carry and my lack of activity. I've become unfit.

BP , high for me at 128/78 controlled by antihypertensives, otherwise much higher ( normally 100/60 before RD).

Temp 37.5 when I flare, otherwise 36.8 /36.9.

It's the RD, my thyroid is fine.

[Agoodlife in reply to Mmrr]

Sorry meant 37C. Your pulse does in my view show that your thyroid is affected. When taken morning afternoon and evening should be close to this. Pulse should be without any special situations over 80. This means that your mitochondria produces enough energy that among other things keeps your body temp normal. What exactly in this chain reaction the trouble lies and it what way depends on your individual situation.

[Mmrr in reply to Agoodlife]

My pulse and BP have always been on the low side throughout my life, resting pulse under 60 when I was fit, healthy and active. That's fine.

During my pregnancies my BP was very low, I fainted easily.

Not a lot has changed except for the high BP, most probably steroid and weight induced.

[Agoodlife in reply to Mmrr]

Exactly the same with me! And with so many of us with RA. What I have learned that this is telling me that my immune system had at birth vulnérabilités. What they were and how they have effected my health, I have in my research learned a lot about. Only sorry that this knowledge didn’t exist then. Many different stressors make the job of the immune system harder. Our bodies present it with chores that enables normal function. The older we get the harder it becomes.😒

Read in one study that the immune system of someone with RA functions like someone many years older.

[New50 in reply to Agoodlife]

I’ve never thought to take my own temperature, not sure how to take my pulse.

[New50 in reply to Agoodlife]

I’m going to my rheumatology appointment this Friday, I could ask her to check, it seems like they don’t really listen as I’ve mentioned various things and got no reply. This one I’m seeing is new to me so hopefully she can shed some light on it. It’s such a strange feeling. It comes and goes but sometimes it lasts for hours. Xxx

[Dobcross1 in reply to New50]

Mine only last a few minutes. I'm sure its RD, as I had this before my RD was diagnosed and therefore before medication. I'd be very interested in what your Rheumatologist says. Good luck.

[Agoodlife in reply to Dobcross1]

If it only lasts when you take RA meds or something else that effects your normal temp regulation then you can start from there.RA is an illness with numerous effects on our metabolism, what exactly in your case, I hope your doc can explain, not a cause per se.

[Agoodlife in reply to New50]

Good luck! Believe me I have tried😕 Hope your rheumies listen better than here in France. Seems like this part of their job is outsourced to the patient.🤨

[PinkLamb]

Yes..for me It's like a flu and feverish kind of feeling and I shiver inside and out ...I get it quite a lot!!!! 😥 Don't know if it's the meds or the RD...

[RA57]

Morning I get a similar thing and get it anytime of the year it started before I got diagnosed with RA and it’s like I can’t regulate my body temperature. I mentioned it to my GP but he was not overly concerned. It comes and goes with me and there doesn’t seem to be a trigger. Xx

[TheBoys]

I got it bad on Sulfa and occasionally get it on Monday when i take my Methotrexate. Its horrible. Makes me feel very very vulnerable. So once every few weeks i dont take my meds and have a clean week, let my body recover a bit.

[New50 in reply to TheBoys]

That’s something I didn’t think of, I don’t like taking the meds, every time I tapper down and come off the steroids I swell up again they seem to be the only thing that works, not sure if the Sulfasalazine does anything, been on them 8 months now.

[TheBoys in reply to New50]

I came off it.

had a bad day in February..so much so that i nearly went to A&E . I ended up booking a premierinn and went had a lay down.

Now the MTX gives me a shivery, weak , vulnerable feeling like am falling. Hence this week not taking any drugs. Lots of water, soups, fruit and veg just to have a cleanse.

[Brushwork]

Gosh that brought back memories of my Mum. She was on Prednisolone, and would get these weird internal shivers or shakes. They came and went. Very odd, but she didn't ever get a diagnosis for them.

[Moonart]

Hello, I have just experienced this in last week. Wondered what it was. Have just been taken off methotrexate injection. Currently taking hydroxychloroquine tablets. Thought it might be RA but such a weird feeling!

[Hidden]

Could be drug induced. I had a similar experience whilst taking sulfasalazine. A deeply unpleasant feeling of inner quaking. I also had a tremor. I quit taking the offending drug.

[Anniebl24]

I think that is what Sulfasalazine did to me.