Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Accutane

Hi

I'm a new member here, although must admit I've been 'lurking' for years, picking up helpful tips etc.

I had a quick question for people, though it is fairly specific. I have been diagnosed for six years, having suffered the symptoms for about eight years, and am currently not taking any pain meds (long story, but basically I am due to start Enbrel / Humira as soon as I have the all clear on other health issues; I haven't dared take NSAIDs for three years since I had a very unpleasant stomach reaction to them). This means that I have been medication free for three years. Dealing with the pain has been unbearable at times and I have lost an enormous amount of movement in my spine, hips and necks as the level of pain has made it next to impossible to exercise.

Whilst waiting to go on Humira, I decided to go on Accutane/Roaccutane for a few months for my acne that has plagued me since I was a teenager (am now approaching my 30s and cannot face the fact that I now have to contend with both wrinkles and spots at the same time!!). Anyway, I started seven days ago and am experiencing the worst ever AS flare I have ever had: I must say, I have been in constant serious pain at least for the last three years and didn't think it could actually get any worse, but it has with a vengeance. I am finding it almost impossible to sleep (it takes me about five minutes to turn over in bed and the process is excruciating) and very, very difficult to walk even round the house. I am having spasms like I've never had before that can be brought on by any form of movement, even a deep breath. I am living in the constant panic that I might sneeze one of these days!!

It is a bit of a long shot, but I was wondering whether any of you had ever been on Accutane and whether you had experienced anything similar (my question might actually be better asked in the Teen forum!). I can't cope with the pain for much longer without losing my sanity, but would attempt to stick it out for another few days if it was likely to subside.

Thanks for any help you might be able to offer...

One of the side effects of this drug is to cause joint pain. Don't know the cause of this, but any trauma in the joints will help kick off AS inflammation in them.


DOCTOR: Therein the patient
Must minister to himself.
MACBETH: Throw physic to the dogs, I'll none of it.

Hi.

Welcome out of the lurk and into the light.....................funny get spots heaps when I flare usually a sign, when I'm ok spots disappear. Particularily if there is gut nvolvement in the flare....

Seems odd the med coincided with the flare:

Found this after a bit of Gooogling....

http://www.accutaneaction.com/ScientificStudies/Zouboulis98.pdf

[bold]Arthralgias and Myalgias[/bold]
Arthralgias and myalgias may occur in up to 2–5% of
individuals receiving oral isotretinoin in higher doses than
0.5 mg/kg/day, with or without calcification of ligaments.
Their appearance seems more common in adolescents and
young adults. In some cases severe muscle pain and temporary
disability for movement with early morning arthralgias
were seen. Occasionally, concomitant malaise and fever
may occur in patients involved, and increases in serum
enzymes including creatine phosphokinase were found. In
some rare cases, a ‘retinoid hypersensitivity reaction’ with
myo-arthralgias has been suspected.

Hi Bleen,... and Welcome to KA!

I'm sorry to hear you are having such a very rough time and hope you'll find some significant relief from the Enbrel / Humira. That level of pain is just not tolerable long term.

I've never been on Accutane, but I did go on a short course of Tetracycline for acne a few years ago. It cleared my skin and if anything I think I noticed a slight improvement in AS pain too. Tho I cannot be sure if it was related, it seemed to alleviate the sinus headaches (I used to get) as an added bonus!

Take good care,

mig

Davo's post is helpful. I did try accutane in my early 20's and had brutal flare and gave it up quickly. I didn't think to check the side effects

 
stevec-they also serve who stand and wait

Thanks for the info. I had read about 'possible arthritis-type' pain as a side effect, but wasn't banking on anything quite like this!

We'll see how I fare...

I did take Accutane twice. Once at 19 yrs old for 6 months then again at 23 for 3 months I took 40mg . I did not feel any flare. I did not come down with A.S. pains till I was in my early 30's.
Accutane really worked for me. it saved my face from being marked from severe cystic acne.I do remember having to sign a paper saying I would not get pregnant since it would deform the fetus. It is a very strong and dangerous drug but it is the last resort for severe acne.
My nephew also took it at 19 and had no side effects.
I hope your flare clears and you can tolerate the drug.
Take care, Yoly

Hello and welcome!

No need to lurk! It sounds like you have had a horrible time! I don't think I can even imagine what you have been through! Call me a whimp, but I take meds. I take Vioxx, Sulfazine (ok, we won't go into that), and when needed, muscle relaxers. I know the pain this disease can bring! You must have a strong will!

With all that said, I haven't taken Accutane. I know someone wiser than I will come along soon!

I wish you luck on the new meds, and I wish you pain free days and nights!

Trinka

Double whammy there with huge pain and no exercise - it cannot last forever.
You've probably heard the wonders of the starch-free diet so i'll just leave it as a solid recommendation.
However, the quickest way to ease pain for me has always been a fast. Just stopping all food and drinking quality fluids - water or weak tea.
Good fruit juice is an alternative if the lower energy levels make life impossible.
Most people can respond to the strach-free, but almost everyone responds to fasting. It won't hurt your acne either.
Three days is a good start.

Ted

I've got Crohn’s disease...
...and he's got mine...
Spike Milligan

I took accutane as a teenager and it seemed to work well for me for a few years following. However, my acne returned with a vengeance in my late twenties (after I had been diagnosed with AS). When the dermatologist suggested another round of accutane, I went along with him and wished I hadn't. That drug does some strange things to your body and, in my opinion, should be taken off the market. In addition to making my AS flares worse, I experienced a lot of other side effects. I even suspect that taking accutane as a teenager may be the cause of some of my problems today.

My advice to you would be to throw the accutane in the trash. There is a great product on the market called Proactiv solution; you may have seen the infomercials for it. Most dermatologists won't mention it to you because of the agreements they have with the drug companies. I had suffered with severe acne (sometimes cystic) for 20 years and about three years ago, decided to take a chance and ordered a two month supply of Proactiv. It was the best decision I've ever made. I noticed significant improvement in just a couple of weeks and I haven't had so much as a zit since then. The fact that this simple washing, solution, and cream system is so effective and doctors are still prescribing accutane angers me.

I only wish that I had not been so skeptical about infomercials or I may not have suffered for quite so many years.

Good Luck and get rid of that toxic medication,
Steve