I’ve had symptoms you described. Even with the backing of the……, rheumatologists, pain management docs, internal meds, and psychiatrists I still don’t have a complete answer. I’ll tell you my story
though and let you decide what you can take from it.
It began about 2 years ago. My junior year in college, amidst Cross-Country season training I began a course of Accutane. The side effects were unpleasant for the first few months but it seemed to be working so I pressed on. Now before I go on with this story I want to say (as of so far) Accutane has cured my acne, I haven’t had a major pimple since I went off of it so in that sense it was a success I suppose. Anyhow, 2 months in the joint pain started, I was under extreme physical duress training which only heightened it. Each weekly checkup the same story, take some Ibuprofen. Month 4 rolled around and I’d began missing classes due to the pain, and had to stop attending running practices let alone meets, Ibuprofen at all. I’d even sat down with my coach and discussed the possibility that I may not be able to return next year if this somehow continued, but I reassured him that it would only be a temporary absence from running.
I went into the doctor on the 4 month checkup on the dot, and the same usual questions-
“Any pain or discomfort?”
“That’s normal, just take ibuprofen.”
I knew very well that this was beyond ibuprofen, and decided this may not be worth it. 3 days later I called the physician to terminate treatment one month early due to pain, and a potpourri of other side effects.
The pain didn’t subside after several weeks, and cold weather seemed to intensify it. It was miserable. After a day of walking in the cold between classes I’d be up all night in pain for some reason so awful if felt as if a thousand tiny hammers were relentlessly hitting my knees. It wasn’t until weeks after treatment too that I started connecting that there might possibly be a correlation between the Accutane and the random muscle jerks I’d been receiving. If I had to guess on a good day I’d get 3-4 an hour, on a bad day 10-15. They’re painless, but enough to break your train of thought.
I began seeing doctors at the …… almost exactly one year since discontinuing Accutane. In the summer the pain seemed more mild and manageable, however the muscle jerks remained about the same. I began where my dermatologist had recommended I go when I asked what I should do after I terminated treatment- pain management. In retrospect this was a bad move, but I didn’t know any better. I’m sure now looking back on it describing the bizarre symptoms he thought I was drug seeking even with my mother there to give a more accurate account.
The symptoms included
-Joint pain in knees and ankles, which intensified throughout the day and in cold temperatures.
- Joint pain in unusual places, such as the sternum during sneezing
- Muscle spasms (which were noticeably visible that day and got their attention)
- Burning dry eyes, and mouth, with decreased vision especially at night.
- And numbness which surfaced later down the line
- Insomnia due to pain at night, and sever sleep exhaustion as a result
-Depression (pain maybe and loss of mobility, who knows)
In any case he looked at me like a moron and sent me to a Rheumatologist name “Dr. …” for a follow up. Dr. … at Clinic did treated me pretty curtly as well again my mom whom was present, and despite not meeting the criteria for a fibromyalgia diagnosis told me that’s what she thought it was. I was given Cymalta, and Trazadone for sleep, along with Lyrica I believe by Saeed my pain management doctor who ran with her diagnosis for the subsequent months. To her credit she did run the bare bones Rhumatological labs, which all came back clean, and gave me a thorough exam. She was just an unpleasant woman, with a complete lack of bedside manner. I felt more humiliated in that appointment than any moment in my life I think. It was very disheartening.
I saw this pain management doctor for about 6 months trying different tinkering. None of the fibromyalgia treatments I responded to however, and the Trazadone made me nauseous, and too sedated the next day to attend my 8am classes the following morning anyhow. In short nothing had improved. I remember on my 2nd or 3rd to last visit I ended up flat out asking him for an Ambien prescription to help me sleep, which I’d had success with when taking in high school for some sleep issue. This old school Indian doctor wasn’t having any of that even though he couldn’t provide me with any other viable alternative even when I asked. Getting Ambien to try was like pulling teeth. He acknowledged he couldn’t offer a better treatment than narcotics could provide at this point, yet was unwilling to proceed to them. At this point I knew this “Dr. …” couldn’t provide me any relief and meanwhile I was failing my classes due to the above outlined issues.
I knew I had to do something, so I terminated treatment with Saeed after he suggest another round of painful knee injections of cortisone, which had previously failed.
At this point I referred back to my primary care doctor, who was “Dr….” of ….. who finally referred me to one of the top diagnosticians in the … “Dr. ….”- whom also completed a comprehensive exam and questionnaire. But, after the labs for his hunches came back clean quickly dumped me as a patient, and refused to take any more appointments to see me despite assurances to find out what was wrong with me (no exaggerations here).
At this point I read on up on Accutane and neurological and musculoskeletal side-effects on pub-med.com more extensively. After weeks of extensive research cases did begin to pop up. Typically they were cause/effect cases- as in patient took Accutane, then developed a rare neurological disorder (for example one is, Stiff-Persons Syndrome) but none really nailed the drug in documentation for causing neurological damage. However, a trend had unfolded. Many times Accutane patients (especially if under extreme physical duress) developed long term side effects according to my readings. I returned to “Dr. ….r”, and showed him some case studies I’d researched. I asked if he’d researched any of this, he replied “No I haven’t Owen.” I asked him after seeing me for at least 6 months with no prevail he’d learned about this, he had no response, and no answers. I burst into tears at this point, and said that he’d essentially wasted a year of my life. A harsh but true (to some extent) reality that a little research could have been pulled up by any of my previos physicians at …….
From there I immediately terminated my medication (Cymbalta) which I was still taking with no relief, and causing impotence which didn’t seem a priority to my pain management doctor. I figured I could do without it. I then read up on treating neurological pain which I clearly had. Medical options I hadn’t tried were out there, but one radical answer I turned to was Medicinal use of Marijuana Without approval of the…… . It wasn’t great, but it was better than anything else I’d tried. At first it made the twitches worse, but then it began to ease them, and I could sleep again! I was amazed. I wanted a doctors blessing but at this point I’d found an answer. At the time I did this Marijuana was/is Illegal in Ohio, and I no way condone what I did. In my case- it was a matter of survival, and being out of options.
I began to run again, as I had a modality of pain control finally. It was going great. But I began to notice numbness in my lower legs, which spread upward as I continued to run. One day I lost coordination however and they collapsed. They began to seize, and spasm like I was running in place. I had no choice but to go to the doctor. He had no real answer, however prescribed Gabapentin 600mg daily, along with Hydrocodone 5-500 every 6 hours for pain every. And told me to follow up with my primary care doctor, “Dr. ….” a week later. He had a bizarre term for the spasms in my legs which I can’t remember, but he observed in his office.
I did indeed follow up with doctor …. Again, explained my symptoms and he said “Hmmm.”, and asked basically if the medications had helped, which they had. He apologized about not doing his homework and showed me further articles he’d pulled up verifying what I’d found. He said “I’m glad you came back to see me, I’m sorry”, I felt in a way vindicated for everything even without a diagnosis. I finally felt like I had someone who believed me, or that was searching for an answer like me. The rest of the appointment discussed exploring untapped treatment options. Mainly continuing the Gabapentin and vicodin, which we ended up increasing both of, and adding a low-dose of valium into the mix to minimize but not eliminate the muscle twitches. We also scheduled a Neurology appointment which I’m still waiting to get into. Exercise is still painful for me and challenging, but the numbness for the most part has dissipated and the twitches are much more infrequent. Most nights I can sleep normally as well.
All in all this is the cocktail I ended up on and my final, yet informal diagnosis
Diagnosis:Post Accutane Pain Sydrome
Gabapentin 900mg Daily
Hydrocodone 5-500 / 1-2 tablets twice daily as needed
Valium – 2mg daily as needed
.5mg xanax as needed for anxiety (rarley used)
Wellbutrin SR 2x150mg daily (for depression which developed throughout the course of this, which is now going away slowly I feel)
I hope this gives you or anyone who may read this a jumping off point. Primarily read over pubmed.gov and search Accutane side effects. Neurological side effects are listed on the warning label for a reason. Secondly don’t give up, even at the best hospitals there are doctors who pass presumptions, but there are good ones there too if you give them a chance.
as evidence there are many side effect and may be by days we see more but
till now there are some things accutane do like you mention:
-back pain and bone pain
and most bad effect in rare:
so some that you mention may be related to many diseases but if you have
the last 2 symptoms intracranial hypertension or vertebral hyperostosis will
be problem as it may cause all what you said but i advise you
- very healthy food care
-natural health care for all the minor syptoms
-do not use alot of drugs like :
ibuprofen to relive pain as it have many side effect on longer use
steroid injection have bad eefect on joint after injection and body too and if
this method repeated
so weneed first to take everyhting used healthy for most of symptoms to give
your body and immunity to help us to can knowwhat really the cause not
always try things while your suffering still and your problem with no
improvement and so you should have the intention and power to can help
your self by patience before drugs do as psychological things very important
in this cases