LupusMCTD

Welcome everyone in search of support & information of Lupus & MCTD

Hi...went to my Rheumy today. Told him about the constant, relentless sweating, fatigue, difficulty driving, bruising, lack of concentration, inability to remain focused on things at work, etc etc. His response was that all of these things are being caused by the prednisone. He also said that it isn't the MCTD that is making me feel like this. Has anyone else gotten this type of feedback from their Dr? I have been on high doses. Started at 60mg in mid-May, down to 30mg now (I have TA too and that requires the higher dosage).
Does this sound right? I thought the MCTD was causing the fatique and cloudy thinking but he keeps saying it will go away as soon as I get down to 10mg of prednisone.

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I wish I had an answer for you, but the highest I have been on is 10mg and currently down to 5 mg every other day (soon to be every 3rd day). I still experience those things. My doc said that he doesn't think I need to be on prednisone though and that I have fluid in my hands and will probably switch me to methotrexate.. (?). Isn't that hard to say on such a small dose? I guess I just need to believe in what he says, but I just don't know.. I have never been on higher than 10mg.

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Hi Patricia,
I'm so sorry to read your going through a rough time right now.
Yes fatigue and cloudy thinking is kind of a normal thing for those with a MCTD but the meds too can enhance it. Honestly, I think the Dr is trying to calm you down and make you relax and not worry.

Most pills have side effects, I'm like many.. I take more pills to take care of the side effects from another pill!
It can be an endless cycle.
I now take the bare minimun of meds, I got rid of Nuerontin, sleeping pills, stomach pill called Achiphex, and a few others.

Here is Prednisone side effects... see the long list of side effects?
Sometimes other meds are needed to help with the side effects.
I just hope not !
Kathy
Common Side Effects:
Check with your doctor if any of the following side effects continue or are bothersome:

•increased appetite
•indigestion
•nervousness or restlessness
Less frequent or rare:
Check with your doctor if any of the following side effects continue or are bothersome:

•darkening or lightening of skin color
•dizziness or lightheadedness
•flushing of face or cheeks
•hiccups
•increased sweating
•sensation of spinning
Always Notify Doctor:
Less common

•Decreased or blurred vision
•frequent urination
•increased thirst

Rare

•confusion
•excitement
•false sense of well-being
•hallucinations (seeing, hearing, or feeling things that are not there)
•mental depression
•mistaken feelings of self-importance or being mistreated
•mood swings (sudden and wide)
•restlessness
•skin rash or hives

Additional effects:
Side Effects that may occur when this drug is used for a prolonged period of time. Check with your doctor if any of the following side effects occur:

•abdominal or stomach pain or burning (continuing)
•acne
•bloody or black, tarry stools
•changes in vision
•eye pain
•filling or rounding out of the face
•headache
•irregular heartbeat
•menstrual problems
•muscle cramps or pain
•muscle weakness
•nausea
•pain in arms, back, hips, legs, ribs, or shoulders
•reddish purple lines on arms, face, groin, legs, or trunk
•redness of eyes
•sensitivity of eyes to light
•stunting of growth (in children)
•swelling of feet or lower legs
•tearing of eyes
•thin, shiny skin
•trouble in sleeping
•unusual bruising
•unusual increase in hair growth
•unusual tiredness or weakness
•vomiting
•weight gain (rapid)
•wounds that will not heal

Other Notes

Corticosteroids may lower your resistance to infections. Any infection you get may be harder to treat. Check with your doctor as soon as possible if you notice any possible signs of an infection, such as sore throat, fever, sneezing, or coughing.

After stopping this medicine, a body may need time to adjust. The length of time this takes depends on the amount of prednisone taken, and how long it was used. After large doses of this medicine for a long time, it may take up to one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur:

•abdominal, stomach, or back pain
•dizziness
•fainting
•fever
•loss of appetite (continuing)
•muscle or joint pain
•nausea
•reappearance of disease symptoms
•shortness of breath
•unexplained headaches (frequent or continuing)
•unusual tiredness or weakness
•vomiting
•weight loss (rapid)

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The highest I have been on is 80 mgs and during that time I had LOTS of energy, didn't sleep much and probably had the cleanest house ever... the other upside was clear skin, friends used to call me neutrogena girl...

downside was the moon face, a pudgy belling, nightmares, cramping in my hands and legs, mood swings, tarry stools, hot flashes, cold sweats.... once I started to taper off, things got a bit better... I am currently on 2 mgs a day...

I was able to lose the weight I gained so there is hope after prednisone... I hope that it does make you start feeling better.

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Patricia,
my husband experiences the same symptoms on prednisone and his doctor tells him the same things. He started on 60 mg the end of august and now he is at 40mgs soon to go to 35 mgs. He also has diabetes and injects 4x's a day, usually he is on oral medication. I think it is true that the side effects are from prednisone. His doctor said that the medication is a double edged sword. It is necessary to get inflammation under control but causes other problems that are very difficult to deal with. Hang in there I hope you feel better soon.

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Yvette,
Thanks for the reply. I am down to 10 mg now and the side effects are not as bad. 60 was absolutely horrible. Does your husband also experience the problems with concentration and thinking clearly?

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Patricia,
He does have problems with his thought processes. He usually drives me in to Boston for my own appts and the last time he insisted on driving. It was the first time he could not find a hospital and failed to get me to my first new rheumy appt for my UCTD. He cried on the way home and I felt so bad for him. It just stinks that we are both dealing with autoimmune problems at the same time. The prednisone can also make him extremely irritable and tired. The only problem is he has not slept through the night since 8/17. He said he has a weird uncomfortable energy and he is exhausted at the same time. To him it feels like an electric current running through his body. :( He is now down to 30 mgs so we are hoping for an improvement. Keep smiling, there is nowhere to go but up! Yvette

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