Anyone here used Accutane before?

sunnyhours

Hi everyone!
I still don't have an answer as to what I have...I lost my blood test papers and I started to think about when all of this started. And the only answer I could find was during my College degree in Graphic Design...it's funny how it all corresponds to a few months after I started on Accutane (an acne medication closely related to vit.A).
Basically I've done some research and it appears that I wouldn't be the only one with back and joint pain that has taken Accutane...so I'm beginning to think this might be related...

On another note I'm seeing my doctor tomorrow, finally! I'm hoping he'll prescribe me something for the pain that doesn't cost a fortune and works...not like Lyrica at a 120$/month that only seems to help with my anxiety which is probably caused by pain...just like my sleep issues...
Anyways I hope everyone feels better than I do right now!
Have a good night

tillytop

Morning Sunnyhours.

I am sorry you are in so much pain at the moment and really hope that the doc can prescribe some effective painkillers for you.

It is interesting to read what you have found out about the Accutane. I don't have experience of this drug but hopefully other forum members do.

Really good luck at the docs tomorrow.

Love Tilly xxx

dreamdaisy

I think that's the drug that's behind episodes of deep depression with some who take it - I am not sure of that tho. I haven't heard of it being connected with joint pain - keep up the research, sunnyhours - it sounds an interesting (and quite possible) link. I hope things are generally improving overall for you. DD

sunnyhours

Guess what? I just came back from the doc...
"Doctor! Doctor! I'm in real pain!!"
"Take an anti-depressant and call me in the morning..."
No not really, that's not how it went...it actually went much worse...
I explained my pain in details and in a way a doctor would understand...he told me it might be my anxiety that was causing my pain...I told him I was pretty sure it was the other way around, and that my anxiety was caused by my pain, but I said okay it's possible I guess (after all I thought, he's the doctor).
He then tried to explain to me that my pain is all in my head (he said psychosomatic, freaking doctorate prick I thought to myself while remaining calm and looking unphased... :evil ) he proceeded in the end, without any prescription for anything to open the door (show me the door I should say).
I then said in a polite tone (as I always am ) what should we do about my pain and/or anxiety? He looked so happy
He started bullshitting me about taking some anti-depressants!
I need to tell you guys I told him I am completely BROKE and he not only chooses an anti-depressant not related to pain management but he suggested I try the new Pristiq that just came out (very high price tag $$$) but I just had told him the Lyrica (also very high $$$) worked only on my anxiety and not on the pain itself (which basically means it's not ducking psychosomatic!!!)
Also I had a discussion about my anxiety and I told him I was on Clonazepam 0.5mg and it worked wonders for anxiety...but he said and I quote "That's ****!" and since I live in a french speaking province I was shocked to hear these words from my doctor...
anyways!...
That was my appointment with my doctor!

jbwal

Hi
I have been suffering really bad joint pain and swelling for months now.At the same time the inside of my nose has been really dry and sore.I have done research and was amazed to see how may other people who took accutane have similar problems.I am 46 and took it 4 years ago.I am sometimes crippled with the pain mostly in my hands and feet.I hobble like an old woman.I also have noticed that my skin over the last few years seems to be aging prematurely. i have just had a very large dose of kenalog to see if this will help. My rheumo says he's not really sure what it is as such pain at my age is usually hereditary but there's no history of it in the family. I am convinced that it has been caused by the accutane as the pain s where there were there were slight aches when I took the accutane.I too would love to hear from other people who experienced arthritis several years after taking accutane.I think that lots of people who developed arthritis quite a while after taking the drug might not connect the 2 as being related.Has anyone got any recommendations about how to deal with the pain?

katymac

Hi

I've not been around for a while, but just reset my password tonight, and came on for a nosey.

Your comments about Accutane (or Roaccutane as it is called in the UK) are very interesting. I haven't taken it, but my son did, when he was 16 - I had to sign,as it was nomaly given to people who were well through puberty. However, his acne was so bad, he was almost suicidal.

DUring the time he took it, he had nose bleeds, very dry eyes, and didn't feel too well. But, his acne cleared up a treat. I think he had two courses, but it's about 12 years ago, so I might be mistaken.

Anyway, since that time, Michael's health has never been right. He has had periods of really bad depression, and been diagnosed with fibromyalgia and acrocyanosis/possibly Raynaud's.

A couple of years ago, I did some research to see whether the Roaccutane could have made Michael's health what it is now, and I drew blanks. I even contacted some medical accident lawyers to see if they knew of any cases, but they didn't. The interesting thing is though that I have Sjogren's SYndrome (dry everything, including lungs, bowel, gastro problems) and OA, as well as Raynauds, so I'm now wondering if Michael has inherited some of my conditions, but they have been enhanced by the Roaccutane.

Kathyx

skezier

Sorry Fred I can't help but doing a quick bit of hi-jack....

Hi Katy,

So sorry to read about Michel but wanted to say I also have the acrocyanosis and raynaud's as secondary. They always told me its just the luck of the genetics and the raynaud's and bone thing are often liked as well so please don't take the fact he has it on your shoulders.... its just unfortunate flower.

I wonder does he have any treatment for the circulation? I have had iloprost now for 11 years.... it used to work very well but I am older and the veins less pliable but if he doesn;'t it might be worth thinking an asking about?

Its a horrible drug, its really revolting if your unlucky but...

Heres the plus side....

It gives me more energy and I heal again as well as don't get so breathless. The acro in my case is effecting all of me as the blood vessels are all too small. I know the iloprost is honestly revolting if you react to it but its 5 day that give so much help.

You take care and I hope Michel gets a break from it and feels a lot better soon. Cris x

katymac

Thanks Cris

Micheal is doing okay just now - in fact, he's getting married in June. He has two small children, and a pretty busy life, so we are very thankful. He takes Nifedepine and Tramadol just now, along with amitriptyline. If he does go downhill again though, I will pass on your suggestion.

Kathyx

skezier

Hi Kathy,

That's brilliant I hope they will both be very happy.

I found the Nifedepine didn't do the job at all hence going on the iloprost but keep that one on the back burner and if he ever needs it its there in reserve eh?

Hey mine is aggressive and really is affecting all of me but it still helps

You take care and I am really pleased he is beating it! Cris xx

katymac

Thanks Cris

He did have a few tough years, and became quite depressed, but life seems steadier for him now. His last major flare was about a year ago, so finger's crossed, he can continue to be okay.

Remarkably, he hasn't seen a rheumatologist in about 7 or 8 years - not by choice, but once he was diagnosed, that was it. He did see a vascular doctor at one time, who just blew him out of the door. We made a complaint about him, and Michael would never go back to see him, even if he was desperate.

I'm with a rheumatologist for the Sjogren's - not the same one as Michael saw, and my thinking is that Michael should be with the same one, then if there are any inherited symptoms, the rheumy will be familiar with the family history. We might have to beg for a referral if he does become very unwell again.

Kathyx

shenanigans84

My brother took accutane briefly and he got arthritis from it. Because there haven't been enough trials to prove that this happens, different doctors respond to the suggestion differently. But the link in the search engines between accutane and arthritis should raise some eyebrows, and personally I think the risks are two high with this drug. My brother was an athlete - now he can't go surfing, play basketball or ride a bike without feeling terrible pain.

shenanigans84

As for how to deal with the pain, it doesn't seem like any tried and true methods are out there yet, except to stop exercising.

elnafinn

sunnyhours wrote:

funny how it all corresponds to a few months after I started on Accutane (an acne medication closely related to vit.A).
Basically I've done some research and it appears that I wouldn't be the only one with back and joint pain that has taken Accutane...so I'm beginning to think this might be related...

My son was prescribed this drug in his teens for very bad acne. He is soon to be 30 years old and has suffered from dry skin, dry nose and dry lips ever since. Due to a football ankle injury which occurred a good few years after stopping this drug, he always has to wear ankle protection when playing football. He does not suffer any back or other joint pain.....

Elna

misty5183

i have used accutane, and have swelling hands, feet and joint pain!

littlemissmai

Hey, I know this post is very old but I just wanted to share my experiences with you.

I am currently taking Roaccutane (UK) for the second time. The first time I took it I had all the common side effects, joint/ muscle aches and pains, extreme tiredness, dry skin etc etc once I stopped taking the medication though the side effects did subside after a few months of stopping it. Unfortunately my acne came back and I have recently started it again. My side effects are worse this time, my joint and muscle pain is significantly worse so they are keeping me on a very low dose of the drug to side effects manageable.

I'm unsure if the drug has long term effects on the joints or not. I'm not entirely sure if the medical professionals know either. I did ask for my dose to be increased (my ache is still bad) but they said no and that I have to look after my joints....

I have listened to many people put out warnings about Roacutane due to the long term effects it has had on their health. There are lots of youtube videos of people warning people not to take it, stating that taking the drug ruined their life etc etc.

It's definetly a drug that should be used with caution, and I do believe it has caused some serious long term problems for many people.

Weather or not it will have a long term effect on my joints I don't know.