Excessive sweating.

[Diddydriver]

Last January my rheumy consultant stopped lefludamide as it was making me lose far too much weight, he then put me on 7.5mg steroids and since taking them I have been sweating profusely especially at night, which in turn is making me very tired. I spoke to the clinical nurse today and she told me to reduce the steroids by 1mg a month. What is puzzling me is why I can't just stop taking them. Can anyone enlighten me please?? X

[Runrig01]

Once you have been on steroids longer than 3 weeks you are required to taper. I suffer terrible head sweats for 4yrs now, I am down to 3.5mgs and still getting them. Not so bad at night thought. Day time can dry hair 3-4 times 😏

[nomoreheels]

Hiya DD. I'm sorry that leflunomide has done that to you. I hope your Rheumy has options for you to consider? I started LEF last November & been fortunate to have no side effects, except for a bit of hair loss early on but I had my hair cut so I could just wash it & let it dry, it's back to normal now.

Steroids need to tapered if you've been on them 3 weeks or more, especially at higher doses. The reason being they emulate our adrenal glands, when we take steroids we're basically increasing those hormones. Ordinarily they are able to reduce inflammation on their own but any additional inflammation such as we have they can't cope with, it's too much, this is why we supplement with oral steroids. If we reduce them too quickly once we've been on 7.5mg (equivalent to the natural production) or more or even lower doses for any length of time we risk having withdrawal symptoms. This is because the body has got used to the higher dose with adding oral steroids so having a taper plan is necessary for the adrenal glands to get used to reducing until they're back to their natural production. Symptoms which would indicate too fast a taper are fatigue, nausea, headache weight loss, sickness & diarrhea to name a few.

I hope once you've finished your taper you'll be back to normal, well you know what I mean! x

[Pat64 in reply to nomoreheels]

Hi NMH. I have just read your post on Leflunomide. I have been taking it since last August and although I had no side effects in the beginning, my hair has thinned considerably in recent weeks and I lose quite a bit on a daily basis. I am on 10mg daily and my rheumy has told me not to stop the drug. I was just wondering when you say your hair is back to normal, if your hair loss was only temporary and it eventually thickened up and grew back to how it was originally. Hair loss is very stressful so it would be good to know how others have been affected. Many thanks. Pat 64.

[nomoreheels in reply to Pat64]

With LEF the hair loss had been about the same as when I started MTX & if I have an increase in dose, slight & really it doesn't concern me because I know it's not permanent or going to come out in handfuls. I do notice more hair in my brush & I need to check the shower plug hole more regularly but if I keep it shortish so I don't need to use products or style it with my hot brush nobody would ever know. I'm also on 10mg daily & it's settled now, so that would be around 3 months. I have a reasonable head of hair but it's fine & been the bane of my life as it wouldn't hold a style but the regrowth has a definite wave in it so when I don't style it I don't feel undressed if that makes sense? When I do use my hot brush it doesn't fall flat 5 minutes later so in that respect losing a little hair with an increase in MTX or as I had early on with LEF isn't a bother. I don't colour it, I'm fortunate that the bit of grey I have is well distributed but I think if you can get away without the less we put on our hair helps when you have hair troubles.

What seems odd is that you're experiencing this a good while since starting LEF, that I think is more unusual. Reducing your dose isn't an option so if it's working for you & if it's not too bad, not coming out in clumps or patchy, I'd persevere for a while, but do bear in mind mine has always settled, it's never been dramatic loss. You're not deficient in any vitamins that you know of are you? LEF may be getting the blame for something else which may be underlying. Vitamin D, iron, zinc, each can show in our hair skin & nails if we're deficient, I think vitamin E is another. Also including more protein in your diet, I read somewhere that can help but I've not tried that myself, that's something, you've not changed your diet recently have you? I hope my experience is helpful & that it's just one of those things that happens & you find less hair in your brush soon too.

[Pat64 in reply to nomoreheels]

Hi, I do appreciate your very helpful reply. It's good to know that you have not continued to lose hair as my worry has been that the longer I am on Arava, the more hair I will lose. I do take Vit D and a multivitamin daily but I've had low iron (less than 10) for a few months now and although I am taking an iron supplement, it has made no difference to my levels. I think this is called chronic disease anaemia, due to RA and not much can be done about it so it's hard to know if low iron or Arava is causing my hair loss. Thank you again for all your advice. Pat 64.

[llyon1]

So I didn't wake in pain & have to wait for meds to kick in I started taking meds at night but through trial & error discovered if I take the steroids to close to bed I pour sweat. If I take them at 6/7pm & go to bed at 10pm no problems.

[sylvi]

I am not on steroids now,but i do still get terrible sweats especially round my head and shoulders.xxxx

[Diddydriver]

Thankyou for the replys This forum always amazes me, what ever I ask there is someone to give me an answer, I don't know what I would do without you wonderful people. Now I understand why I have to taper off. I am very worried at the moment. I am having problems with my eyes, I have Sjogrens and best disease, I had a cataract removed last Nov and have to go for the other one in April. As neither can be cured and with my hubby to see to it is preying on my mind. However onwards and upwards as they say, on mon I am going to Cornwall for a break and so looking forward to it.

I sincerely hope you are all as well as you can be with this awfull disease and looking forward to the summer.x

[nomoreheels in reply to Diddydriver]

I hope you enjoy your well deserved break DD. We've decided to see more of our own country this year with h being as he is. Decided to become members of the NT & maybe the RHS. What with a house move, changing the car to an estate so we can take the dogs on our days out & stay overs we're looking forward to a few mini hols. Oddly enough Cornwall is top of the list, we've wanted to go to the Eden Project & the Lost Gardens of Heligan since before we left the UK. Then maybe Devon & Dorset if time allows. We want to go up to Scotland too & over to the north east, plenty to plan.

I do hope your cataract op goes smoothly & helps, as much as it can with your comorbidites, you seem to be collecting them, that's not so good. Take care & I hope the weather in Cornwall is kind to you. x