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IMURAN Decision- Help Me


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#1 sandra

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Posted 09 October 2009 - 02:05 AM

Hi Sclero Gang

Here is my dilema. My specialist here in Canada has had me on Imuran this past year, Famous medical center in Baltimore USA disagrees and said " Imuran will not help Scleroderma, and recomends I stop, My doctor disagrees and said stay on it, Hmm What should I do, step on my primary care doctors toes, or tell him I am taking it , and lie and not?

What would you do?

Today is eyelid biopsy day...
Sandra

#2 ladyhawke

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Posted 09 October 2009 - 04:09 AM

Hi Sandra

I was diagnosed with polymyositis 3 years ago and started the Imuran. I take it 3x a day for a total of 150mg's. I was told this was the highest dose. Right after the poly, I was diagnosed with Scleroderma. My rheumatologist told me that the Imuran will do absolutely nothing for the sclero. It is keeping the poly under control very well. I've been on the same dose for the full 3 years. He is right, it does nothing for the sclero for me. He told me that there is no drug out there for sclero. They can give drugs to relieve the symptoms but that is all. When I first was diagnosed, they put me on 80mg's of prednisone. I went through an awful lot with side effects, the least of which was loss of hair. I bought a wig. I weaned right off of it, but just can't do it. I'm back on only 5mg's. It's really not enough, but I don't want to go any higher because of the side effects. I would really like more, but I can handle it at this dose. It just gives me enough of an edge to "tolerate" the symptoms. I too am in Canada (Ontario). If you are anywhere near Kingston, email me privately and I'll give you the name of my rheumatologist. He's very good. I would not want my primary doctor handling my scleroderma. When I first got it and couldn't get out of bed, he told me that I was going through menopause and wrote me a script for premarin. I told him I didn't want it and he just looked at me and said "then suffer".....he is no longer my doctor. Anyway, this is what I was told about the Imuran and maybe someone else has something else to add. I too would be interested in hearing from anyone about this.

Cheers,

Lisa
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#3 Kathy D

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Posted 09 October 2009 - 05:22 AM

Morning Sandra,

My sclero specialist has me on methotrexate, he said it would not help scleroderma but should help my joints, fever and fatigue. Sure enough I have noticed some improvement in these symptoms. I wonder if your doctors are talking about different sets of symptoms? What improvements have you had on the Imuran? Those improvements if any might help you decide to stay on it or not.

Good luck and I am curious to hear how it turns out.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#4 janey

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Posted 09 October 2009 - 05:46 AM

Sandra,
We do have a short section on Imuran for scleroderma. It is short because, from what I can find, there haven't been a lot of studies on the use of just imuran for scleroderma. I have found a couple of studies where imuran has been used effectively as a maintenance immunosuppressant after IV cyclophosphamide.

Your rheumatologist is probably seeing it as an effective immunosuppressant for connective tissue diseases in general. Like Kathy I was started on methotrexate. I have sclero and polymyositis and the methotrexate helped both diseases. Many of my symptoms were stopped in their tracks or slowed down considerably. After 3 years it lost it's effectiveness and I was put on Imuran. That lasted 3 weeks. I couldn't handle the side effects - my fatigue returned with a vengeance and I was always nauseous.

If you haven't visited our Medications for Sclerodermapage, you might want to take a look. There are alternatives. However, I guess you really should ask yourself - Self, do I feel better? Are my symptoms worsening? Are my symptoms improving? I'm no doctor, but if your symptoms are stable and you feel better, then something is helping.

Big Hugs,


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#5 Joelf

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Posted 09 October 2009 - 06:49 AM

Hi Sandra

Uh uh, my consultant has suggested Azathioprine (Imuran) when I finish my current medication of Cyclophosphamide (as per Janey's post).

I have absolute total faith in my consultants but don't really fancy feeling nauseous.......perhaps I'll get used to it (the eternal optimist!! ;) ) Another side effect listed is hair loss; I could probably cope with being sick but hair loss.......no way!! :huh:

I don't know what to advise re. your doctor but hope you can find a medication that helps you & makes you feel better. :)

Kind regards x

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#6 sandra

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Posted 10 October 2009 - 02:11 AM

Hi Joelf
Sandra callin,
Ahhh the Joys of Imuran... the higher the dose the more hairloss, I lost I would say 1/4 the amount on my head but not clumps just good thinning, I began feeling so rotten that hairloss did,nt bother me, just wanted to get some comfort & control it got sooo bad :excl: that I would have welcomed being bald just to get feelin better!, and everyone reacts different , some people on high dose don't lose hair at all it just depends on so many things, medication combinations, or overlapping diseases, Its all a mystery, that I have given up trying to sort out, because it "rented too much space in my brain" So I hope you get more releif & comfort. Someone should have better advice than me here, I usually receive advice here, so thats what I went through on Imuran, but like I said every one reacts different. Sorry not much help...
Lets wait & see more responses, I am curious what others will say too.
Stay Positive :bye:

#7 sandra

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Posted 10 October 2009 - 02:28 AM

Oh Ya Joelf
It Did help me (Imuran) It took a good month of slowly increasing the dose then it kicked in and felt a whole lot better, Yesterday I had an Eyelid biopsy , and asked the doctor What symptom is the Imuran treating with me?, He said its for my Lupus dimension, I have scleroderma and 5 overlapping other diseases- See, its all to complicating! But yes it did help me.
Later, Sandra

#8 sandra

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Posted 10 October 2009 - 02:55 AM

Goodmorning Ladyhawke,
Thanks for replying, You Have Poly? My neighbor just came home from her second time being admitted to hospital , She is 56 yr. old Diagnosed Poly Mialgia Rheumatica (PMR) Before the diagnosis the pain was so bad she stayed in bed for six excruciating weeks, in pain, no appetite, her general practitioner doctor said "You have swollen knee"! One day she said to me " I need "Depends" so I don't have to get up " Drive me to the bridge! Well right then and there My husband called the ambulance the hospital kept her for a week got her on Prednisone and within 3 days she felt a LOT Better! Its been almost a month and she is reducing prednisone a little each week now.
anywho , back to us now, Thanks for sharing your doctor with me, I am in Vancouver area in BC and have a great Doctor who runs the St. Pauls Hospital Scleroderma Department , he is top notch, patients fly in from different provinces to see him. It Was another one of my specialists that put me on imuran.
Stay happy, Sandra

#9 Amanda Thorpe

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Posted 10 October 2009 - 05:35 AM

Hello Sandra

Whatever you do don't lie about it! I've no idea about Imuran, I too am on methotrexate having been unable to tolerate mycophenolate.

Here in the UK the usual but not only immunosuppressants for scleroderma symptoms are mycophenolate mofitel (Cellcept) or methotrexate depending on the symptoms. Interesting that you've not been offered these but then things are done differently all over the world.

Personally I would always take the word of a scleroderma expert over that of any other doctor.

Hope you make a decision soon and take care.
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#10 ladyhawke

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Posted 10 October 2009 - 02:36 PM

That is funny that someone mentioned hair loss from the Imuran. I'm on what I was told was a high dose (150 mg's) but with the 80 mg's of prednisone, I did lose alot of my hair and as I said, bought a wig. It's now 3 years later, I'm down to 5 mg's of prednisone and my hair is back and better than it was before I lost it. I blamed the prednisone for the hair loss. The Imuran has helped the polymyositis a great deal and has it under control quite well. I haven't found that it has helped at all with any of the sclero symptoms. I find only the prednisone helps there.
Sandra - I have a very good friend who came down with PMR. Wow! It is very much like the polymyositis. She was put on 25 mg's of prednisone and was a good year before she recovered from it. They actually thought at first that she had polymyositis, but then determined that it was PMR.
I'm glad to hear that you have a good doctor. That is I think the biggest part of the battle. Cheers - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#11 Deb1million

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Posted 11 October 2009 - 11:10 AM

hello Sandra
I tried to reply yesterday, but my pc crashed. I hope your lip biopsy wasn't painful.
I was taking Imuran for 3 years, at 150mg a day. It was for my Lupus and autoimmune hepatitis.I didn't have any side effects, or hair loss.

When I was diagnosed with sclero 10 months ago, I was put onto Plaquenil (hydroxychloroquine) an anti-malarial, and then the Imuran was gradually changed to Cellcept. I feel much better now, more energy than I had for last 2 years. I know everyone is different on these meds, but Im lucky its all worked for me so far. I hear that the effects may not last for ever, but Im making the most of life while its good.
chat soon
Debs

#12 sandra

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Posted 12 October 2009 - 12:09 AM

Early Good morning All,
its 3:25 am yup Just woke up , not sleeping much,the past 2 months.
I am on Chloroquine & Imuran & nexium,and 3 different types of anti biotics- each type I take for 7 days ,then the next one for 7, lastly another 7 days of the 3rd one, then I start from the begining again- no breaks for these anti biotics- before I used to due the 3 weeks and break for a week, that was changed to fulltime after I went to USA Med Center, I take up to 4 nexium a day, thats too much they also reffered me to have a Capsule test, you swallow a cashew size capsule camera and they watch it travel through my entire digestive system- seeing everything on the way, also great for slow motility, by timming how slow it travels,there is only one place in canada who does this, Pretty new and high tech, I am lucky to get this test.After 8 Argon Lasor treatments (Watermelon Stomach), they said I can't have too many more treatments (even though I need them ) Because of the scaring , makes the Mal absorption Worse! And I could end up with a Feeding tube & Bag! Nov. is another Argon treatment.Also on Vitamin D & Calcium & baby asprin. My eyelid sutures come out this Friday and hopefully the resuls will be in. Now its wait & see time....
Thanks for callin
Still Blinkin, Sandra

#13 barefut

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Posted 13 October 2009 - 04:01 PM

Interesting info guys,

My scleroderma specialist wants to put me on Imuran in addition to Cellcept to relieve my muscle pain, stiffness and fatigue. She says Imuran works differently on the immune system than Cellcept.

Glad to know about the possible side effects - they don't sound fun. But sounds like some people tolerate it well. Hopefully I will be one of those!

Stay Healthy, Happy, Safe and Warm!

Edited by barefut, 13 October 2009 - 05:44 PM.


#14 Sheryl

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Posted 14 October 2009 - 12:26 AM

Ah Barefut those are some sweet bare feet. Just have to admire your handy work. Such a great avatar. I can't comment on the Imuran but, would like to know more about it myself.
Strength and Warmth,
Sheryl

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#15 alice1

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Posted 14 October 2009 - 06:17 AM

I was on Imuran for about a year. It didn't help me at all....alice1

#16 Peggy

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Posted 14 October 2009 - 11:57 AM

I too have systemic sclero and Polymyositis. I'm on the Cellcept and Methotrexate. My doctor is trying to give me some help with the terrible pain in my muscles and is considering increasing the methotrexate. I tried IVIG and this did bring my CPK numbers down but didn't do anything for the pain so we quit it. I haven't heard of the Imuran and am wondering if I should be pursuing this?

Question............did the Imuran really help with the muscle pain? I know the Cellcept has helped with softening my skin and I can actually squeeze some skin together on the top of my hand. Hopefully this is also helping my lungs.

Is hair loss always a side effect of the Imuran? Nausea too? I don't see my rheumatologist now until January and still waiting to hear from him if he's going to increase the methotrexate. I would just love to have something help with the pain other than the pain patch and oral pain meds. He did say there's nothing that helps with the terrible fatigue I have and I'll just have to endure that.

Looking to hear some valuable info so as to know what to do...........

Hugs,
Peggy

It is quite interesting on how many of us have these cross-over diseases. I have 6 different autoimmune disease and I see that I'm not alone on that one!!!!