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Gabapentin, Hydroxychloroquine and all other drugs!


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#1 xxx

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Posted 21 July 2015 - 10:53 PM

Hello All

 

Are there any proven results for the above drugs?  I have been taking these for one year now!  My GP recently asked me if I thought these where doing me any good and I could honestly say 'I Don't Know'!  I certainly haven't felt any better and all that has happened is I have produced more symptoms!

 

I was also prescribed with Nifedipine (for Raynauds) yesterday, however, after only taking two pills I developed strong head pains, queasiness and drowsiness. 

 

Are all these drugs worth taking when the side effects seem to be ten times as bad?  To be quite honest I am absolutely fed up with taking medication as before my condition was diagnosed I ever hardly took any medication at all!  This is all so new to me :sad:  :sad:

 

Can anyone share any experiences please?

 

Regards.



#2 Joelf

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Posted 22 July 2015 - 06:22 AM

Hi Mothergoose,

 

I can understand your reluctance over taking strong medications; I was horrified when I was first diagnosed with Scleroderma and had to take Azathioprine (immune suppressant) and Prednisolone (steroids) and felt that I was bombarding my body with strong drugs. However, after I started feeling much better on the medication, I realised that if I didn't take the medication as prescribed I would be very ill or even possibly die, which tends to concentrate the mind wonderfully!! :wink: Now six years on, I am trying to reduce the Prednisolone and the amount of Azathioprine I'm taking, so you may find that perhaps things will stablise, as I did and you may be able to reduce the dosage or even stop taking the medication completely.

 

I've only taken Gabapentin for a very short time with no ill effects (during my recent hip replacement) and I've never taken Hydroxychloroquine or Nifedipine, so can't really advise you from my own experience.  However, I've included a couple of links to give you some more information and I'm sure we will have other members who will be able to give you more first hand advice about them.

 

Kind regards,


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#3 Shelley Ensz

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Posted 22 July 2015 - 07:07 AM

Hi Mothergoose,

 

I found gabapentin very helpful for certain types of pain and therefore it really improved my daily functioning. However, eventually I developed untoward side effects from it and had to discontinue it, which I found very disappointing.

 

For you though I must say, there is absolutely no point in taking any pain medication that doesn't actually relieve your pain!  There can be serious side effects to just about any treatment, even NSAIDs, so if they are not delivering worthwhile benefits, they could be unnecessarily jeopardizing your health.

 

I was also on hydroxychloroquine (plaquenil) for many years, until I developed side effects (psoriasis around my eyes, causing vision problems from it steadily flaking into my eyes) for which I had to discontinue it. Recent research shows that lupus patients live significantly longer if they are on plaquenil, so its reputation as a disease-modifying antirheumatic might be very well deserved. Also in my case, plaquenil relieved both pain and fatigue, after it had a chance to kick in (that can take weeks or months).

 

I've been on some medications for Raynaud's which didn't seem to make enough improvement for me to bother putting up with the side effects, and making lifestyle changes were overall more helpful for me in the long run. However, if my attacks worsened and were bothersome despite all my lifestyle improvements, then I'd certainly give yet another go at treatment, and if ulcers are occurring or not healing, then even a whole bunch of side effects are better than amputation!  So it is all relative.

 

I try to always start only one new medication at a time, and to build up from the lowest possible dose. Then I bear in mind that I might be over-vigilant the first few weeks and attributing symptoms to the med that aren't really real, or that might even go away as I get used to it. Generally after about a month I can tell if I am enjoying some actual benefit from it (longer for plaquenil, though, or even gabapentin if you are still gradually increasing the dose).  I've gotten over what seemed to be "bad" side effects, at first, and I've also developed surprising side effects many years after being on a drug, so I try to take it all with a grain of salt.

 

Personally, I wouldn't want to start plaquenil and gabapentin at exactly the same time, because it would be difficult or impossible to tell which one was the most effective with pain reduction, or which one was causing whatever side effect.  If it were me, I'd go on plaquenil first, then if still necessary, start gabapentin maybe four months later.  Otherwise it runs the risk of encountering a problem and then going off both meds out of pure confusion and perhaps even needing to start the process all over again.

 

Good luck figuring out what to do. Keep in mind that it is the overall big picture that matters, not the irksome side effects in the first few weeks. If you are in danger of eventual amputation due to finger ulcers, who cares about a headache during the adjustment period?  Maybe you can cut the dose or increase more gradually, etc.  But if you rarely have Raynaud's in the first place, and you can avoid most triggers successfully, then maybe you shouldn't be on it, to begin with.

 

There are very few treatments that are going to actually alter the course of scleroderma or its symptoms, so the rest of them are more aimed at our comfort and convenience, so don't feel you "have to" take any particular medication that is offered...unless you actually "have to", which should be abundantly clear to both you, and your doctors.

 

:hug-group:


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#4 Amanda Thorpe

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Posted 23 July 2015 - 02:47 AM

Hello Mothergoose

What is worth bearing in mind is how you'd feel now if you had not been on these drugs for a year. They could have masked a flare, a more permanent increase in symptoms. In other words you don't know how bad you'd feel if you were not taking the medications in question.

I am on pregabalin, back in 2013 I was on 200mg three times a day. After coming out of hospital and being unable to swallow and keep much down, I decided to take the opportunity to try and reduce my medication. I cut the pregabalin down to 100mg twice a day and am still okay on that level...just! Maybe cut down rather than just stop and one at a time otherwise you won't know what's what.

I understand wondering whether medication works or not but reality is that you're going to be on medication if you have scleroderma. It's also worth considering what life would really be like without the luxury of medication, the full cost of which we don't pay thanks to the NHS. I know that statement is not really a consideration but I do wonder if it ought to be.

Anyways, if you want to cut down go for it but do one medication at a time and slowly. I probably shouldn't say this but I did not tell my doctor until after I had cut down. I did this in case they were not receptive or helpful and let's face it, they're sometimes not. I have to recommend that you do so under you doctor's guidance however.

I forgot to say that I tried hydroxychloroquine and found it reduced my fatigue and pain, unfortunately I had to stop it because it caused abdominal pain. I tried it twice but the pain defeated the point, why swap one pain for another!

I hope this helps and take care.
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#5 xxx

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Posted 02 August 2015 - 08:36 PM

Hello!

 

Thank you all for your comments and guidance!

 

I immediately reduced the Nifedipine to 1 x 5mg per day from 3 x 5mg the following day after suffering from severe headaches.  This seems to help both with the headaches and a very slight improvement with the Raynauds in my hands but not completely!

 

Last week I reduced my Gabapentin from 3 x 100mg per day to 1 x 100mg per day and can honestly say I have not experienced any differences in my symptoms at all!  Which makes me wonder if this drug isn't helping at all with my pain relief!  I will continue with this small dose at the moment!

 

I will continue on my dose of hydroxychloroquine (2 x 200mg per day) at the moment!

 

I feel a little better that I have reduced a small amount of drugs that I'm taking but can see that it will be a long drawn-out process in getting the dosages to my liking!

 

Thank you for your help!

 

Regards



#6 Amanda Thorpe

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Posted 03 August 2015 - 12:35 AM

Hello Mothergoose

I must again stress that anyone changing the dose of their medication should only do so under their doctor's supervision, in addition, one medication at a time so that the effects of the dosage change can be attributed to the right medication.

MG, have you reduced under supervision of your doctor or are you winging it alone?

I would have suggested titrating down rather than jumping straight down to just 100mg. It's worth remembering that a change in dosage can take awhile to kick in so your pain won't immediately break through if you've reduced your gabapentin too low and I don't remember whether gabapentin is one of those drugs that needs to build up to an effective level, if it is and you cut down too low, you won't just be able to jump back to a working level, which will result in a period of breakthrough pain.

Absolutely stick with your current dose of hydroxychloroquine, you've got too much change underway already and don't forget that it also reduces pain so if you reduce it along with the gabapentin, you could find yourself in hot water.

I do hope that changing your medication is totally successful because I get the want to take as little as possible but please don't accidentally make life unpleasant for yourself. Sometimes we need medication forever and that's perfectly acceptable, please don't feel you've failed if you never change anymore doses and even have to increase them. It doesn't mean we've failed, it means we're sick.

Take care.
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#7 Shelley Ensz

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Posted 03 August 2015 - 09:09 AM

Hi Mothergoose,

 

I'd highly recommend that you see your doctor right away regarding your medication concerns. Winging it can be dangerous. Bear in mind that nobody ever "wants" to take any medication, so you don't have any special corner on that market.  But what you want, and what your doctor wants for you as well, is to restore as much function as possible, under the circumstance of illness.

 

It is especially important to keep Raynaud's under great control, because each episode is probably worsening the disease process. So by avoiding attacks (through medication or lifestyle changes or both combined) you might actually be improving your overall health, and most especially, sidestepping problems such as ulcers and amputations.

 

It's a constant battle for all of us, though, as to weighing the medication versus its effectiveness versus its side effects!  Our doctors are there to help us manage that process. Also, some medications do only build up slowly and many need to be discontinued very slowly, lest even worse side effects occur.  This is the time to lean on your doctor and work very closely with them.

 

A point that I understand nearly nobody gets until it is too late, is that doctors can and do rate patients as to whether or not they are "compliant".  Compliant doesn't mean doing exactly everything they suggest, but it does mean following agreed-upon treatments to the letter and discussing any proposed changes with them ahead of time.

 

Should the time ever come when an enormously expensive, life-saving treatment might be called for, such as a stem cell or organ transplant, doctors take an extremely close look at whether or not the patient is compliant, and they have every right in the world, and typically use it, to deny such treatments if they feel there is a chance the patient might not follow aftercare instructions, which might entail studiously taking many medications with enormous side effects, dutifully completing every bit of physical rehab, etc.

 

My late husband was extremely fortunate in that he had a sterling record of always following doctors orders, or discussing it with them whenever he wanted to have changes in his treatment made. So he absolutely passed the compliance test for his lung transplant.

 

So I strongly recommend that those of us who might be faced with needing lavish treatments in the future be as compliant as we possibly can, so that we build up a reputation of being worthy of special consideration for priceless treatments. In addition to that, it is just a good health habit to discuss our medication pros and cons with our doctors and our pharmacists both before and during treatment.

 

I have to admit that I have been noncompliant on a few things in the past, when it made good sense to me and when I knew for a fact there would be no adverse effects from stopping the meds. And I made a full confession at my next medical appointment. I must say, most doctors figure, if we were able to go off a medication and are happy about it, then they are happy about it, too, as obviously it either wasn't a very bothersome symptom, or the side effects outweighed it, so it's not like you can typically expect a lot of push-back on it.

 

So we can provide some input, maybe helpful or maybe not, but the real discussions need to be between you and your doctor.  Remember it is okay to ask your doctor for permission to experiment with dosages!  I have had permission for variances, within certain parameters, for many medications, and I will often discuss in advance what I should do if I want to discontinue a medication.

 

Nobody wants to take any medication (if they are in their right mind), but nobody wants to be sick, either!  You didn't volunteer for this but you need to either accept some symptoms or treat them, there is no option for magically reverting to pure health, unfortunately.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#8 quiltfairy

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Posted 03 August 2015 - 03:50 PM

Hi all,

One time my doctor put me on 3 different medications in the same week; one was for pain, I don't remember what the others were but I had an allergic reaction to one of them, so they had to remove all of them to figure which one was the one that caused the reaction. After that she started me on one med at a time, that way there is no question which one is the culprit. I just started on one for my Raynaud's and I am starting to itch today, so I will give my doctor a call in the morning. It may not be a allergic reaction, it just may be dry skin but I don't fool around with my meds and if I decide I should change any or the amount I call my doctor first or at some time as I could be prescribed the wrong amount.

I always encourage people to talk to their doctor and if you are not happy with your doctor get a second opinion. I know you are entitled to the in the US, but I am not sure how that works in other countries.

#9 Amanda Thorpe

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Posted 05 August 2015 - 01:03 AM

QF, have you considered that the increase in blood flow, from the Raynaud's medication, might be making you itch? Just a thought.

Take care.
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#10 quiltfairy

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Posted 06 August 2015 - 08:19 PM

I had not, but now that you mention it it makes sense,

Thank you Amanda