It’s been a tough few months for me. While it seems like the Otezla is working for my joints and I’m seeing some improvement in my swollen foot I’ve been dealing with side effects from hell. At first I thought it was the Arava still in my system, but after almost two months off of it (and only 3 on) I still have constant persistent diahrrea. My hair has also started falling out. Not in big chunks (I don’t have any bald patches that I know of yet) but enough that my hair is considerably thinner.
So after messaging my Rheum we tried a med to flush the Arava out, just to rule that out as culprit. Unfortunately, I only took the first dose and then had 24 hours of severe nausea, cramping, inability to eat (thankfully I could drink water) and GI upset. So we ditched that plan and now I’m going off the methotrexate to see if that helps. I’m at a loss, and frustrated that my system seems to hate every drug I throw at it, but I’m thankful for my very responsive and understanding Rheum who got a few whiney messages early in the morning yesterday when I was sure the horrid flush medicine was trying to murder my insides.
On top of that I’m stressed as hell (but I started seeing a therapist last week so maybe that will help), and it’s 112° F out.
Out of curiosity, does anyone know how long it takes to see improvements in side effects from methotrexate after stopping it? I’ve been on it for 6-7 years now, so I’m sure it won’t be quick, but I don’t want to dispair waiting for something to improve.
Hiya Subliminal. Sounds like you’re going through some misery there. I’m so sorry.
The bad news about Arava is that it hangs around your system for a year or two. I know, hard to believe. On the other hand, I believe that MTX is gone fairly quickly. Really, the person to ask is tntlamb.
It is just so damned frustrating, isn’t it? For what ails us, there’s not one thing that works (or stops working) quickly.
Sorry to hear about all this . I have the same understanding as Seenie - Arava can take a looong time, but methotrexate in the doses we take it should be gone in 3 or 4 days.
I had some food poisoning years ago that really hit my system, and though all the other symptoms stopped within 12 hours, 4 days later, I still had diarrhea. A nurse suggested I take Imodium for just one day to give my gut a rest (it effectively paralyses it), because the gut can be so sensitive it just keeps reacting even once the thing it is reacting to is gone. In that case it worked - I was incredibly surprised but very thankful.
This is a really different situation (I didn’t even have PsA then), but I suppose it’s an option you could discuss?
Yeah, that was my understanding too about the Arava, but from the nurse’s message I wasn’t sure if it’d be less since I hadn’t been on it long (which was kind of the impression I got). Hopefully I’ll see some improvement soon one way or the other.
I’ve been a bit bummed about my hair falling out since I’ve finally gotten it long again after a bad hairdresser incident. Looks like if it keeps it up though I might have to cut it short again though as I can’t even keep it in a pony tail anymore and in this heat long hair is just too much
And yes, super frustrating! I haven’t had much luck with meds it seems lately, though I’m really hoping the Otezla does the trick for me.
That’s kind of what I thought too but thought I’d get some confirmation.
I actually have considered trying immodium, and might do so after my systems had a break from the nasty stuff that was supposed to flush out the Arava (I’ve got a tetchty stomach and don’t want to unduly stress it). It might just work to give things a break
I’m a great believer in immodium. Often just one dose does the trick. I had ‘the runs’ horribly on injectable mxt and it was 3 days on immodium before it stopped. But it stopped. Another over the counter (in the UK anyway) med is buscopan which also calms your gut and helps too. And try eating bananas. Someone on here told me that and they really helped.
As for the hair - you’re not peri-menopausal are you? That and indeed the menopause doesn’t help. However there are some shampoo systems out there that do help - try Plantur or ask your hairdresser for the names of some. I found that helped but did take around 6 months. Also there are lots of supplements you’d find in a health food store to help hair and nails. The ones with biotin in them are the best. Again they take a long time but do help. Hope this helps.
I’m only 33 so hopefully not perimenopausal yet (though I suppose it’s possible, as I do get hot flashes from hell occasionally). I suppose I might have to visit my GP eventually and maybe get my hormone levels checked if I can’t get it straightened out.
Thanks! I guess I’m going to have to try the immodium, lol, seems a good suggestion so far and hopefully shouldn’t hurt either
You know, I wonder if it isn’t the mtx that’s the cause of mine. I’m trying to remember when they started and I think it was around the same time I started taking mtx. It’s just been such a gradual change I’m not sure if I ever linked the two. Might have to ask my Rheum about that at my next appointment.
My mom started perimenopause early l, so I just assumed I was following suit (though she had cervical cancer too, then a hysterectomy, which makes figuring her actual beginning of menopause impossible).
I hope things settle for you…the side effects are a real bummer (no pun intended). I have not had a lot of success with DMARDs and I have now had 4 of them…mtx and placquinel helped but the side effects have always outweighed the benefit. For me arava was pure poison which took a good year to recover from and I was only on it for less than 5 months. My gut problems improved with a low dosev7.5mg prednisone, even though I don’t have inflammatory bowel disease as far as they can tell.
However, maybe my gut troubles weren’t meds but the condition… it’s hard to say sometimes
4 half lives of MTX is what it takes to clear it out of your system, same with the bios. Chelation “flushing out” prevents any “FUTURE toxic effects” but it will still have some overall effects from the already bond DNA.
The half life rule is inviolate when starting a “Medication Holiday” A year to come off is not unusual when there are several meds involved and you can only do one (and only one) at a time…
Frankly your symptoms sound more to me like a enteric form of PsA As @MacMac indicated) than a med reaction. Once the inflammation hits your gut all manner of things go wrong.
The other thing worth checking is any birth control/female hormones your are taking particularly IF the symptoms are worse 2 weeks of the month than the other 2. There is a large body of evidence coming out of France that seems to indicate these symptoms as you have described are a result of synthetic progesterone, particularly if you are taking anything that has a CNS effect (anti siezure, anti-depressants, neuralgia meds etc) not playing well together.
I’ve lost a little lately, not sure if it’s due to the GI upset or something else, but nothing too drastic I don’t think (I refuse to own a scale due to a previous episode with anorexia, so the only time I’m weighed is when I go to the doctor). I’ve also wondered if I’m just not absorbing nutrients and such well with the constant GI troubles.
Also not on steroids, we tried them earlier on in the year for this flare and it didn’t even touch it).
Oh @tntlamb I was hoping you’d reply I’ll have to look up enteric PSA and bring it up to my doc, especially if what we’re currently doing doesn’t seem to help, but it def. seems like a possibility.
Also, not on any form of BC as it’s not necessary in my current relationship (my BC is that I’m gay, basically). I never did react well to it anyway when I was on it in my younger years.
My Rheumy thinks I have enteric associated disease. What sort of steroid dose did you try? Not that I’m advocating them, just curious, as they are the one thing that usually gets my tummy out of trouble, BUT, often it takes higher doses than normally prescribed for arthritis.
(Oh, but the rebound flares can be truly awful if I take them for more than a few days).
I did a couple tapers first, don’t remember the full dose but it was starting at 6 and ending with 1 over the course of two weeks. Then I think we tried doing the taper and keeping it at 1 pill a day. I’ll have to look at the dosage when I get home but I’m sure it was just the usual amount…
Unfortunately anything over like 3 makes me a cranky hulk smash jittery non-sleeping mess which I can generally manage for a few days but longer than that I’m not sure I could hold it together, lol.
I forgot to mention that the steriods worked best for me with 10mg of endep. After 18months of gut oroblems andvwhatvI believe was referred pain from my SI joints, I think my abdominal muscles were holding a lot of tension. The endep helped release this tension and supported the work of the steriods.
. I have the same understanding as Seenie - Arava can take a looong time, but methotrexate in the doses we take it should be gone in 3 or 4 days.
which I can generally manage for a few days but longer than that I’m not sure I could hold it together, lol.