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Taking myself off meds...


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#1 amberjolie

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Posted 15 June 2014 - 03:41 PM

I know, I'm insane.

 

But I've noticed that when I'm on azathioprine and methotrexate, I get either weight gain or water retention and my clothes don't fit anymore, and I get depressed over that.

 

And I'm thinking, I'm just fed up with the whole taking medication thing.

 

So I decided to stop for now.  My joints were starting to hurt again anyways, so I'm wondering if the methotrexate stopped doing it's thing anyways.

 

My only concern is that about a month ago I was on vacation, and had been off the aza and MTX due to having a bad cold and wanting to help my immune system get over it (that's when I realized I lost "weight" again before putting it back on after getting back on them), and the first day I was there, I had a terrible bowel accident.  Maybe it was the whole traveller's bowel thing, but I didn't make it to the bathroom, and what a mess!  I felt absolutely horrible because it had never happened like that before!

 

But I'm worried maybe going off the aza will make my muscle tone even worse "down there" and possibly lead to more of these incidents.

 

Anyways, I guess this is just a depressed rant or something.  Even though I'm not nearly in as bad a shape as many of you on this forum (no lung or kidney involvement), I'm still just so sick of being sick...

 

Sorry for the rant! :temper-tantrum:



#2 Joelf

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Posted 16 June 2014 - 06:03 AM

Hi Amberjolie,

 

Sorry to hear that you've been having problems with your medication.

 

I've been taking Azathioprine since January 2010 and whilst I have put on weight over the last five years since I was diagnosed, I put that down to my taking Prednisolone, rather than the Azathioprine. Whist I can empathise with you over taking so much medication (pre-Sclero, I was very loathe to even take an aspirin for a headache! :P ) and weight gain, to be frank, I really wouldn't advise stopping any medication without the express permission of my medical team. I do tinker around with the Prednisolone dosage, as I obviously want to be taking as low a dose as possible, but ironically, it's not my lungs that are preventing me from going lower than 5mgs, but my joints, which now that the dosage of steroids are lower, are far more painful than they were when I first started on my medication. Obviously, I don't like putting on weight, but I dislike aching joints even more, so to a certain extent I feel that I have to put up with the weight gain to have the benefit of the medication.

 

Thankfully, I don't have the gut involvement, so haven't experienced the bowel accident you describe and therefore I wouldn't like to say whether stopping the Azathioprine was a direct result or not. However, I would suggest that you consult your medical team before changing/stopping your medication and perhaps they can advise whether a lower dosage of the immunosuppressants might help you. 

 

Kind regards,


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#3 Amanda Thorpe

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Posted 16 June 2014 - 10:47 AM

Hello Amberjolie

 

I totally understand and have done this myself, I stopped mycophenolate and methotrexate, albeit because of side effects of crippling headaches and nausea. Mind you weight gain is a side effect!

 

Weight gain can be an issue because of medication, lack of exercise, disability, diet, mood and so forth, often we just have to accept the extra weight gained. Our scleroderma bodies, more often than not, aren't what we would have chosen or envisaged but they're ours and we need to love them, at least accept them, and this usually includes extra weight, we no longer have a flat stomach, we may be a bigger dress size. However, there are times when the amount of weight gained(ing) is beyond what our bodies can carry and we can accept. When this happens I think weight is so serious a problem, especially if it isn't controlled, as to merit a change in medication.

 

Well I changed my medication because I gained and continued to gain weight. It went beyond vanity, I'm not talking about going up a dress size but enough weight to change my shape, enough weight if it had continued to make me obese and more. Buying some clothing the next size up is one thing, needing an entire wardrobe change quite another. I no longer recognised me.

 

I also wondered if medication made any difference, after all I developed myocardial fibrosis on it but I had skin softening too. Who knows how much worse the fibrosis could have/would have been and what else would have happened if I had stopped medication earlier. Your guess is as good as mine! To me the deciding factor now is whether the effects of medication are worse than whatever problem it's supposed to alleviate. If medication is worse it's gone, no hesitation, but that's just me.

 

I agree with Jo, it's unlikely your accident was because of any deterioration between stopping the medication and when it happened. You can either see how it goes, accepting that any internal damage may only be declared via symptoms by which time what's done is done. I hear ya when you say you're heartily sick of medication but realistically, as a person with scleroderma, I would have thought your chances of being medication free are nil therefore maybe consider different medication/dose/combinations?

 

Let us know how you go amd take care.


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#4 Shelley Ensz

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Posted 16 June 2014 - 06:57 PM

HI Amberjolie,

 

Kudos for you for being honest about your situation and for asking for input on the matter. That is a smart move on your part!

 

I can definitely understand your concerns, I have also had trouble dealing with medication side effects.  I would urge you, and anyone else in the same situation who is reading this, to consult your scleroderma expert at your very first opportunity. They really aren't shocked or offended when we encounter problems with side effects. They can discuss options with you, including the option of no treatment and the risks that entails as well.

 

Depending on the circumstances, opting for no treatment is often possible with scleroderma, particularly if there is no internal organ involvement or if you are in a good spell.  It may not be the end of the world and it is within your rights as a patient to determine what you can cope with, both with risk of side effects and risks of nontreatment.  In short, we support you all the way -- provided you discuss all of this with your doctor. 

 

Your doctor might have other treatment options for you, or perhaps even refer you to a nutritionist if you decide to go back on the meds. It might even be that your thyroid is going wonky, which is common in scleroderma.

 

In short, please work with them, because scleroderma can be a tough tiger to tame, and keep tamed. And we want only the very best for you, of course!

 

:emoticons-group-hug:


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#5 Sweet

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Posted 17 June 2014 - 07:23 AM

HI Amberjolie,

 

​I'm sorry to hear you are having distress over your meds. How are you feeling now? It's all such a vicious cycle at times. I've been in your situation before. Not with those medications in particular, but I had to eat crow later and get back on mine. As it turned out I did need them. Silly doctors, I hate when they are right.

 

Shelley gave good advice. Talk with your doctor and make sure they know. Mine just laughed at me (we're good friends, I didn't take it wrong) 

 

Keep us posted.


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#6 Shelley Ensz

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Posted 17 June 2014 - 10:34 AM

Hi Amberjolie

 

One thing I forgot to mention.  Occasionally, those with scleroderma (or other serious illnesses) can get into very serious health predicaments, such as being in need of a transplant of some sort, like Miocean has experienced. 

 

What few people realize is that not everyone who needs serious and expensive procedures like a transplant is automatically approved for them.  They have to undergo a very rigorous weeding out process.

 

Part of that process often entails reviewing a person's medical history to see if they have always been medically compliant or not.  That doesn't necessarily mean doing absolutely everything your doctors have ever recommended, but it does mean not making one-sided decisions about discontinuing vital treatments.  Its often hard to imagine now that the seemingly "minor" things we do might have a major impact on our treatment options in the future.  And, that may or may not be a concern for you, especially if you know you wouldn't ever be game for a major procedure like that, anyway.

 

Consulting our doctors as soon as possible or reasonable when we encounter issues with meds can also help keep our relationship humming along okay.  Some doctors are a little over-the-top in refusing to treat patients who don't do exactly everything they command.  But most of them just assume that a fair number of us will be noncompliant, for whatever reason or for many reasons, and they just take it in stride and sometimes even with a good sense of humor (as Sweet encountered).

 

Anyway, although this might be food for thought, I can guarantee you that it is calorie-free!  :emoticons-yes:

 

:emoticons-group-hug:


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Shelley Ensz
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#7 Kathy D

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Posted 17 June 2014 - 07:52 PM

I am not on either of those meds and I do not travel, and I too have bowel accidents.  I have found a discount store with cheap panties that I like, so I just toss the icky ones :)


Diffuse Scleroderma Diagnosed March 2009

#8 Shelley Ensz

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Posted 27 June 2014 - 10:06 AM

Hi Amberjolie,

 

So, have you managed to discuss your medication changes with your doctor yet?  If so, how did it go? 

 

I am really hoping that it went well, overall, and am sending good wishes your way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 amberjolie

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Posted 26 July 2014 - 07:43 AM

Hi!

 

I obviously don't come on here often, since it's been a month since your last posts.

 

Anyhow, I didn't discuss it with my doctor yet (my next appointment with her is in October), but I did leave a message with her receptionist about what I was going to do, and I didn't get a call back, so she must not be overly concerned.

 

I am noticing my muscles seem to be getting more tired again.  Nothing worse about the bowels (hopefully that stays that way). 

 

I actually do have thyroid problems and am on medication for that (didn't stop those meds - I figured those were pretty important to keep going on), and I'm pretty sure I've been checked recently for my levels and I was ok.

 

So I'm just playing it by ear to see if I can handle being off them.  I'll see what the doc says in October.

 

Thanks for all your replies!



#10 Amanda Thorpe

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Posted 27 July 2014 - 01:37 PM

Hello Amberjoile

 

People come...people go...they come back...they go again...and repeat! There's always someone here wanting to hear how you're going, especially as you fought long and hard to get doctors to acknowledge what you already knew, you have scleroderma!

 

I would love to know what your rheumatologist says, you see whether I take a particular medication or not is determined by my immediate comfort not long term gain. In other words, if the medication makes me feel better or causes no discomfort I take it, if a medication does not make me feel better or causes discomfort it hits the bin not the back of my throat. Now this is a purely personal decision, supported by my husband, and is not appropriate for everyone but, having made it, the world did not stop spinning...well not yet anyway!

 

Take care.


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#11 CmeBe

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Posted 28 July 2014 - 01:17 PM

Hi Amberjoile!

 

Just wanting to chime in on this - although its not the same disease, my mother has had RA for 20+ years. She was on Remicade and methotrexate for a while. However, here she is twenty some years later not on any sort of medication for her arthritis expect ibuprofen of course. She decided to quit taking hers years ago because the Remicade was making her sicker than the disease itself. She was falling asleep while driving, etc. My mother is in Stage III or even Stage IV of RA. She no longer sees a rheumatologist anymore. At this point, she can barely walk on her own, she limps because she has a bakers cyst in her leg which she refuses to get removed as well as she needs surgery on both her feet and most likely knee replacements.

 

Regardless, she is happy doing what she's doing. She never liked the treatment or the rheumatologists she was seeing since she had to drive so far to see one. (She's out in the boonies.) She lives by herself and still mows the lawn, how she does that I am not sure. So in my opinion it may be worth it to try it, but if you need a transplant I would not ignore that. My mom is in good spirits but she needs new knees of course. I would just closely monitor yourself to see how you can handle it.

 

Like others have said - sometimes the drugs do more harm than the disease itself.

 

Good luck! :emoticons-group-hug: