[Happy Heart]

I have really enjoyed reading the info here. I have found it very helpful. I am a 59 year old woman. In good health until Dec. 3, 2007. At 9:30 pm that night, suddenly both of my ankles started to hurt. Then it was a headache, sore hair, sore neck, and within a few days every joint in my body was involved. My shoulders, elbows, wrists, hands completely froze. I couldn't function by myself. Nights in bed were torture. My internist thought it was a viral thing and gave me Celebrex. That did nothing for me. I asked for a med pak and he gave me 4 of them back to back while waiting to see a rheumatologist. The rheumy did all the blood tests and put me on pred. At 30 mg I felt pretty good but developed lots of side effects, including diabetes. My rheumy gave me a diagnosis of Connective Tissue Disorder/Inflammatory Arthritis and put me on Methotrexate. In November 2008, I went to Mayo Clinic in Jacksonville for another opinion. The Mayo Rheumy said it was Lupus. The medication is the same, pred & metho. I have been in a flare since 12/3/07, no remission yet. I have a few symptoms that I have not seen addressed here. Sweats, day & night. The night sweats are drenching. Sore throat & swollen glands almost every night. Urge incontinence. I do OK during the day but from 6pm to 9pm I get very stiff and sore, can barely walk or get up and down. I have to go to bed by 8:30 or 9:00 because of extreme discomfort, and tiredness of course. I see my rheumy next week. I am not sure the metho is working. I must wean off the pred because of the side effects but can't seem to get below 20mg and still function. Hopefully someone out there has some of these other symptoms that I have and can give me some help. Thanks for reading this long story, I really shortened it too! God Bless You All as we fight this disease.

Happy Heart

 

[doodlebee]

Hi Happy Heart—what a great nickname. I'm new here too and just wanted to say hello. Your symptoms sound much worse than mine, so I don't know if I can say anything helpful. I hope your appointment goes well next week and the rheumy can come up with something more to help you. Let us know how it goes, ok?

 

[silverlady1]

Hi Happy Heart, I am new to this site also , have found alot of helpful info and lots of good wishes from members, good luck with your next appointment .
Ellen:flowery:

 

[debatat]

Hi Happy heart

What a great name!!

Sounds like you are having a rough time. I develpoed diabetes due to the steroids as well, and I had to wean off them which was hard as they gave me relief from my symptoms.

I have a few of the same symptoms as you, I have inflammatory arthritis and suffer from night sweats and swollen glands. I think ( not 100 sure) that the sweats and gland swelling are part of the inflammation process.

It sounds as though your symptoms arent under control, Hopefully if you explain all your symptoms to rheum he will be able to help you. Sorry I cant be of more help.

Hope you get some relief soon

Deb

 

[Maia]

You may want to ask your rheumy about other medication options if you have not noticed any improvement after 1 year on the current ones. There are many other possibilities including Plaquenil, NSAID medication for pain and inflammation, Imuran, etc.

Night sweats seem to be very difficult to go away until they just stop on their own --- this is from what users here have said in the past at least. You may want to ask if any other illness(es) that can cause them have been effectively ruled out too - they do occur in lupus but there are many other causes for them as well.

Good luck - hope you find something that really helps soon.

 

[LolaLola]

Hello Happy Heart, Welcome here. I don't know how big your dose of Methotrexate is but sometimes just increasing it helps. It can take time to get the dose right. 30mgms of pred. is a lot for long term use. When you have tried to cut down have you reduced it very slowly? You really do need to go slow at this and cutting down takes a long time. I am finally down to 6 mgms. Five years ago I was on 60mgms for a while! I never thought I would get this low a dose.
x Lola

 

[Pink Pearl]

Hi Happy Heart,
Welcome to the board.
I second Lola on doing a very SLOW withdrawal on the pred. If you try to do it too fast, you rebound and are often worse off than where you started. I call myself the
"queen of pred withdrawal". I was maintaining on 80 mgs of pred a day. Doing a rapid withdrawal was not working and ended up higher than before to get the same benefit. When I switched to a new rheumy, he taught me how to do a slow taper and while it took about a year, it has enabled me to keep my pred level at alternating days of 3 mg and 1 mg. I have been there for about 13+- years.
I am also on methotrexate, but take a much higher dose than most, as I can't take plaquenil. That gives me monster migraines. I have enough of those with the lupus, don't need any more help there. I have been on mtx now for nearly 17 years.

Are you aware that prednisone will cause the sweats you describe, also the bladder incontinence issues? It also causes you to not sleep well and have insomnia. At 80 mgs I slept about 3 hours out of 24. I was exhausted, but that was all the drug allowed. I also had to sleep nearly sitting up as if I laid down, I could not breathe. While it is a help, it also does cause almost as many problems as it helps others. I found listening to a tape/cd helped me to distract my brain and my body could get the rest it needed.

Your rheumatologist needs to know about your pains. Often fibromyalgia goes along with other autoimmune diseases. To give comfort at night and keep the fibro at bay I use 4 - 1" pads on my bed. I have 3 eggcrate and 1 memory foam. It helps me to keep the pressures off the
"trigger points" and lets my body relax. Often tri-cyclic antidepressants will be prescribed with fibro, but it is to utilize the ability they have to let the muscles and tendons relax so you can sleep.

I keep a log of what is going on and take it in to my rheumy. He really likes them as they help him to provide me the best medical care possible. He also keeps my "love notes" in my chart for reference. There is no way I can remember all I need to go over with him.

You'll find a LOT more hints on survival with sle here. Just ask.....so many people who have survived all this before us. Take care and stay well.
Sally

 

[LolaLola]

Hello Sally, I just wanted to say "Fantastic" to you for getting your steroid dose so low! Very well done. I can't take Plaquenil so I am on mepacrine as well as metho. It works well.
x Lola

 

[Pink Pearl]

Hi Lola,
Thank you! :thanx: I didn't have much choice. I became toxic to steroids following a hospital stay of pulsing followed by a bout of steroid psychosis. Not fun.
It was not easy, but I had the support of all the doctors on my team. I had to bite the bullet and just hang in there to do it.
Now, pred above 5 mgs makes me feel sick. We've gone on other roads to deal with my lupus.
Happy weekend!
Sally