MCTD Prednisone withdrawal

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freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 11/23/2008 7:57 AM (GMT -7)   
Hello Everyone-
It has been forever since I posted on here, but I do scan the threads often. Things have been going pretty good for me and I am now on 500mg
Chloroquine 4 days a week and have been tapering Prednisone and am down to 1 mg/day. I have been on Prednisone for about a year now, and up until May of this year I could not go below 5mg without getting severe pain. Plaquenil didn't seem to work for me, so the Dr. put me on Chloroquine which is going well.
I am having a problem though and it is concerning me. When I started 2mg prednisone daily, my fingers started swelling and i had a hard time
making a fist with my left hand (4th finger sore and skin tight). I went to my Rheumy and after examining he told me to continue my taper and to
follow up after being off Prednisone for a month. I am now in my 2nd week of 1mg Prednisone and my hands are always swollen, and it takes the majority of the day to be able to make a fist with my left hand. Both my fourth and fifth finger are sore, and I am noticing that the tip of my index finger hurts.
Is this something that I should be getting checked, or is this consistent with the taper?  Aside from this I have intermittant aches and pains but nothing that is causing me problems.
 
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/23/2008 9:50 AM (GMT -7)   
Hi Freename,
 
You might need to stay at 2mg for a longer time.  Wow, that is a really low dose, good for you!!!  If you end up staying at 2mg for an extended time, that is okay.  That is a super low dose.  I wish I could get there! I've been on 8mg for about 8 years!!
 
Never rush a prednisone taper.  Go with what your body is telling you.  If you need more, just go with it.  You'll be healthier and happier in the long run!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 11/23/2008 10:33 AM (GMT -7)   

Hi Ginny

Thanks for responding. Wow, you just made me feel better!- Yeah, I kinda thought that I need to go up for a bit, and especially with the Christmas season coming, I really want to feel good.

I just wish I knew if my symptoms were part of this illness or something new and to see the Dr about. Unfortunately, not much was told to me at diagnosis, and I admit I didn't want to ask much. I was told though to try to stay away from the internet, because alot of it is not accurate, and much is doom and gloom. So of course I immediately went to the internet, and felt so scared until I found this forum, and read the postings. I am so thankful for people like you.

God Bess

Freename


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/23/2008 11:58 AM (GMT -7)   
Hi Freename,
 
I'm glad you feel better about all this!  It's wise to listen to your instincts.  Swelling and stiffness in the hands is very common in lupus. I would bet that it's just your body saying, "please give me a bit more prednisone, and the swelling will go away!"  It can't hurt you to go up just 1mg.  What's so great about prednisone is how fast it works!  You'll probably notice a difference tomorrow or Tuesday if you go up in the dose today.
 
Just remember that you know your body better than anyone.  A doctor can give you some advice, but they don't know how you're feeling.  Stay in close contact with them to let them know your concerns and what YOU want to do.
 
Yeah, there's a lot of crap on the internet about lupus, but also a lot of really good information.  The worst place to find info on lupus is at the library where most of the books are about 25 years old or older! EEK!!!
 
We're always here!!!
 
Have a good day Freename, God bless!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 11/30/2008 9:12 AM (GMT -7)   

Hello Ginny

I increased my prednisone to 2mg on Wed and am just starting to feel a little better(thank you for the advice) My hands are still quite swollen but I do get

some mobility throughout the day. I have a Rheumy appt for the 8th, so I can get on top of this.  I do have a question for those with MCTD though;

I notice and have read that Raynaud's is a main symptom, but I do not have that. Are there others like this?


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/30/2008 10:11 AM (GMT -7)   
Hi!
 
Oh yes, it's very common to not have all the symptoms and disorders that can be part of MCTD.  Every single person with Lupus, MCTD or UCTD will have different symptoms and disorders.  The diseases of 1000 faces!
 
My Raynauds didn't come along until about 3 or 4 years after my Lupus diagnosis. I've also been told that I likely have MCTD and not just Lupus.  I have so much going on that I fit into that category better than "just Lupus".
 
So yes, you might never get Raynauds, or you might down the road.  It's a crap shoot!
 
I'm so glad to hear that you're feeling better on the higher dose of Prednisone.  Every little bit helps doesn't it.  It's amazingly powerful stuff!  Good for you for getting in to see your rheumy so quickly.  Being proactive with this disease will set you up for success!!!
 
Hope you have a nice Sunday!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/30/2008 10:13 AM (GMT -7)   
Freename,
 
Long term prednisone users sometimes have a lot of trouble tapering when their adrenals have atrophied and don't kick in the needed amount of cortisol.  Prednisone is the same thing and shuts down our adrenals.
 
Give it time and see if your adrenals kick in or not.  Some users need a low maintenance dose to keep their immune system in check and/or make up what the adrenals can no longer produce.
 
If you don't see improvement in a month then I would talk to your doctor and see what he thinks.
 
You didn't give details of your prednisone taper.  How high the orginal dose and how you did the taper.  It is always best to taper very, very slowly unless there is some other, urgent reason to do it quickly.  I have been tapering for 3 years and am now down to 2.5mg and no problems.  3 times I had some problems which only lasted for a few days.  It takes time for your adrenal glands to return to normal as well as your immune system.
 
Hope your taper improves for Christmas.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 11/30/2008 10:39 AM (GMT -7)   

Hi Again Ginny and hello to you Bill

As for this crapshoot, it really makes me paranoid of every little ache, discolouration etc. I am trying so hard to just let things be and concentrate

on wellness.

Regarding my Prednisone taper, I think I have been fortunate because when I was diagnosed last November I was only put on max of 15mg daily and only for a short time, then I was on a gradual taper. The problem I had was I never seemed to be able to get below 5mg without severe pain. My Rheumy switched me from Plaquenil to Chloroquine and kept me on 5mg and started a very slow taper. This worked great, and only started to get swelling when I reached 2mg a day(that was Oct.). My Rheumy told me to stay at 2mg for 1 month then reduce to 1mg daily for a month, and then he would follow up.

Well, 3 wks into the 1mg taper is when I started with the bad hand swelling and stiffness and asked my question about it. As I mentioned just giving myself a few days of 2mg seems to be helping abit. Aside from this I can't say I am suffering with much pain. Of course I have upper arm muscle aching from time to time and the odd sore knee but my mobility is like night to day compared to fall of 2007.

Freename


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/30/2008 11:11 AM (GMT -7)   
Hello
I am not a doctor but is sounds possible you need more disease modifying medicines, because of this swelling of the fingers which is a very typical symptom of MCTD. Options might be to add another antimalarial, Quinacrine, to the chloroquine for a major increase of anti malarial type benefits. This can avoid going onto the immunosuppressants or a very low dose of something like Imuran, and managing without the Prednisone except for quick reduction of inflammation in flares.

I wouldn't know why he wanted to wait another month before considering introducing another medicine. The difficulties with the hands must be very unpleasant to live with and could have a serious effect on your ability to live a normal life. It's not a good sign when doctors discourage patients from seeking support and using reliable sites for information. These days it's a becoming common for them to recommend sites and forums. They know that informed patients make more successful patients. I suggest you ask for copies of your test results and learn to understand them. There should be a dialogue between patient and doctor with treatment being a partnership.

Good Luck

BB

Post Edited (BumbleBee1) : 11/30/2008 11:20:36 AM (GMT-7)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/30/2008 12:27 PM (GMT -7)   
Agree with BB.  It sounds like your doctor never gave you enough meds to deliver a knock out punch to your immune system's misbehavior.  I had 60mg of pred for about 5 months and then started a slow taper.  My polymyositis was resistant and it took ivig to save my life.  My doctors added 150mg of imuran at that time and I took that for 18 months until I had problems with it and was forced to reduce to only 50mg.
 
15mg of prednisone is considered a high maintenance dose and not typically what is given to someone in a flare...particularly in the early stages.  It seems like your immune system is still acting up...maybe not severely but enough to cause the inflammation.  Prednisone is acts an an anti inflammatory agent but it also suppresses the immune system so it acts on both the symptom and the cause of the inflammation.
 
Is you doctor experienced treating AI diseases?  If not, I would get a second opinion from a rheumy or neuro about your case and treatment.
 
Good luck,
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 12/1/2008 9:41 AM (GMT -7)   

Wow- reading these posts makes me realize just how new I am. This is my second Rheumy and I found him through a search. He is actually a department head and also head scientist at our City's major health network. As for his reasoning, I can't answer that, but luckily when I call I get fit in, and originally I was going to see him next week, but after reading these posts I called today and am seeing him first thing tomorrow morning. Plus the fact that my mobility is really declining. I have taken notes from both of you and am going to ask for copies of my labwork tomorrow. I just want to clarify, what he meant about the internet- he was referring to outdated info or opinions that often plague the internet. By no means did he say anything about forums and actually encourages to me pursue postive support. When I first saw him I suffered from severe anxiety and depression. The anxiety started when I saw a naturopath that questioned why I thought I had MCTD and had I been tested for ALS as it had some of the same symptoms. Needless to say, I went home, got on the internet and preceeded to start getting severe attacks, and having to wait several weeks for my neurologist's appointment only brought to the lowest of lows- thus his comment about the web.

Bumblebee, I don't know why he hasn't added other anti-malarials?- I do know that I have to be watched very carefully with the chloroquine, as I have  pre-existing issues with my eyes; I have occular Toxoplasmosis, and because of previous medications I also have a cataract.

Well, tomorrow I will be asking the questions, I should have been asking awhile ago. The knowledge and experience on this site is so helpful

Thanks again

Freename


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/1/2008 4:35 PM (GMT -7)   
Freename,
 
Your doctor is right about old information on the internet.  Keep in mind that all of us on this forum are in the thick of the battle and many of us have doctors from the best research and treatment centers in the world.  I have a group of very well educated and experienced docs which include 2 rheumys.  One is local and one is from Northwestern U where they have a very advanced rheumatology department with very advanced research in a number of areas of AI disease.  I just saw that doctor today.
 
You will find this forum and a couple of others that focus on myositis disease have very well informed participants.  Some are not but most have gone through the mill of diagnosis and treatment hell and have lots of good answers and advice.  You need to rely on your doctor but having so many going through a similar process is good and you can compare notes.  Many doctors are not educated or experienced in the treatment of lupus or rarer diseases like mctd or must myositis disease.  Even my original rheumy sought 2 more experienced colleagues for my extreme case.  It is not that easy to diagnose and treat these diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

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