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View Full Version : Opinions best med for fatigue pain?



Kjell
04-15-2013, 02:47 PM
Hello. Just wanting some input on people's experience with the immunosuppressant medications. I've been on Imuran for 2 months now, an honestly feel no different. Wondering if the mtx injectable would kick in faster and help more. I know these meds take time, I realize I'm super impatient but I think I'd notice some kind of improvement by now.. Just the slightest? Been on plaquinil for 3 months as well. My rash look better, but I can't keep up with life. It's crazy. Still feeling achy and can't lift my legs real good. That's real odd too as I use to be very flexible.. Any thoughts are appreciated!

Sammy
04-15-2013, 07:03 PM
Hi Kjell,

When i started taking MTX oral it did take some time to start to work ( about 6-8 weeks ). However it did make a big difference for me when it started to kick in. In saying that my dosage has increased so if you start taking it they will probably start on a smaller dose to see how you go. The injectios are an option but i think its generally for people who can't take the oral meds because it makes them sick as its processed differently by the body. It certainly is worth asking your Dr about though he would certainly know more.
Lupus is an exhausting illness and i know i wish a Dr could give me a super pill and say take this and you will feel better in the morning. !!

Good luck and i hope you feel better as soon as possible.

Samxx

Kjell
04-16-2013, 06:06 AM
Sammy,
Have you tried other medications? Or just the MTX? Thanks for the information. It's so helpful to get other peoples experiences. Take Care.

BonusMom
04-16-2013, 06:19 AM
I was on Imuran for quite a while and noticed no appreciable difference in my symptoms while taking the medication so finally my Rheumy took me off of it. I didn't start anything else in it's place.

Right now, my labs are all WNL with taking Plaquenil so I'm not gonna rock the boat.

Kjell
04-16-2013, 07:15 AM
Bonus Mom, So is the Plaquenil controlling all your symptoms? I'm wondering how I'm going to know what is helping what since all these medications take so long to get into your system? I really do not understand this disease at all. The more I read about it, the more confused I get. I bought the Lupus bible and it is very helpful. Making my husband read that too. He'll understand the medical terminology and be able to come up with some suggestions too. Ugh!

BonusMom
04-16-2013, 07:33 AM
Yes, Plaquenil is all I'm taking for SLE/SjS and, as of last week, all labs are normal. I'm dry as heck due to Sjogren's, but overall, doing pretty well.

It does take a while to start working but Plaquenil is truly amazing once it does. And to think it's one of the less expensive and least damaging (as in side effects) medications available for autoimmune diseases. Just make sure to take it consistently and as prescribed.

Sammy
04-16-2013, 06:04 PM
Hi Kjell,

I have also tried plaquenil for about 2 years. I found it alright in the begining but ended up stopping it because it gave me stomach pains all the time. I also take mobic ( anti inflam ) as needed. I try to stay away from pred but have had to resort a couple of times. MTX is the only immunosuppressant i have tried i have asked my rheumy about other drugs but i havent been down that path yet.
what other symptoms do you get i see you mention a rash is that the butterfly rash? ( i don't get that ) I certainly get sore joints which is very frustrating. Some days i just feel so old and tired ...

I hope you are feeling better and having a good day

Sam xx

Kjell
04-17-2013, 06:08 AM
Thanks Sammy. I have a rash, and the butterfly rash on my face. This rash has been all over my body, and at times very itchy. I actually had blister bumps all over my arms and legs at one point. My skin looked burnt, red hot and would radiate.. Especially my face and ears. Get hot and red. These symptoms are calming down! It looks much better! The lack of stamina is not getting better. I have never experienced anything like this. I physically can not push through an activity anymore.. I have a hard time explaining this to my 21 year old daughter. WE just did a 6 hour hike at Devils Lake last year, and now can barley hit 5 stores at the mall with her. I tried the mind over matter thing and attempted a 3 mile walk with a friend.. I ended up unable to do anything for 4 days after that. I can not push through this! It's been like this for 5 months now. I have a very hard time recalling things, names on the tip of my tongue kind of thing. I look and feel exhausted, but sleep 10 hours a night. I hurt, my arms and legs, groin area, feet, head aches. I still have a hard time lifting my legs to get dressed? That is just so strange to me. The pain feel both in the muscle and joints. I have never had a "flare" before and was just diagnosed, so I have nothing to really compare it too. I'm sorry your suffering too. How long have you had this? I'm praying this is the worst it gets, I'll get this under control and get back to my life soon.. Thanks for your reply

Sammy
04-17-2013, 07:38 PM
Hi Kjell,

I'm sorry to hear you are in pain. Maybe you should speak to your Doctor about going onto MTX. I must admit i felt so much better when it started to kick in for me. I still have pain and flares but on the whole i am able to get to work 4 days a week. My week ends consist of not doing too much and getting some rest but thats ok. My life has certainly changed and my activities have been modified to what i can cope with but before MTX i was much worse. I find every day is different some days good some days bad and some bloody terrible..Lupus is such a frustrating and bizzare illness but i'm so happy i have joined this group so i can speak to other people who know what this disease does to you. Some of your symptoms are the same as mine and others similar. I have had Lupus for about 3 years now. I am still just learning about my flares, what they do to me and how to manage them. My Doctor is hoping that it never affects my kidney's and i certainly hope that remains the case too.
I can certainly relate to your muscle and joint pain it's unbelievable isn't. You don't even have to be doing anything to have terrible pain. Some days i can't even lift the plates out of the cupboard for dinner. I hope you have help and support at home and as i also have two teenage daughters who love to shop i understand how difficult this task is. I'm glad my kids don't have this illness but i do wish they could understand how i feel a lilltle more. I think it comes down to Mum doesn't look sick so she must be fine...
Thanks for your reply, keep talking it helps.

Sam xx

Kjell
04-17-2013, 08:29 PM
Thank you Sam. My Dr suggested I see a counselor that specializes in chronic illnesses. To help me adjust. She mentioned that with my personality this might be a hard adjustment.. To let go of the control, and cope with things as the come up. Might not be a bad idea