Lauren tried the MTX for 3-4 months and we noticed large amounts of her hair falling out. The doctor is wanting her to now try a drug that starts with Az.....not sure.
I am at a loss as to what advice to even give anymore. The Az....medicine made her very sick to her stomach (meant for people with bowel disorders - so it can affect the stomach adversely). She decided to go off all meds (even her anxiety/depression meds and just take prednisone/ibuprofen and naproxen when necessary.
I also hate to see her in so much chronic pain (her spine is also affected)......she spends way too much time in bed. I know that exercise would be helpful, but she feels like crap all the time - doesn't want to exercise.
Here is one bright note. She does not have the psoriasis. Yep, that's about the extent of the bright note.
Is she willing/able to at least take an anti-inflammatory on a daily basis? This doesn't get to the root of the problem, but would certainly be helpful. Have they considered a biologic?
It's funny with MTX. Doctors seem to be convinced that there are very few side effects from it, and are surprised when a patient presents with it. I have a question though. . . My rheumy prescribed 1 mg of folic acid a day when I was on MTX to minimize the most common side effects, namely hair loss and mouth sores. Was she taking this along with the MTX? I still had the occassional mouth sore but it was pretty minimal, and my hair loss may have been more hormonal than anything else. I had just stopped breastfeeding, and the MTX seemed to start premenopause in me.
For exercise, is there anything gentle, even just walking up the street, or gentle stretching, that she might be willing to do with you? I wish you the best of luck with this. . . It's a tough situation to be in.
mtx is a awfull drug , i have been on hydrochlooquine for 4 mts i also take amitriptyline 50mg i have just started to feel a improvement but have found one with out the other doesnt work feel like someone as just switched me on ,and the psriosis is well improved to wont get too excited could just be a good day and not use to them
I also heard folic acid helps prevent hair loss, but I had a horrible reaction the mtx as well. I would suggest, as a therapist, that she stays on her anxiety and depression meds while on prednisone, which can cause severe mood swings. Good luck!
I feel like maybe she should at least give the antibiotic treatment a try - since she is so young and the side effects of the drugs for PsA can be life threatening.
When I started mtx 6 or 7 yrs ago, my hair fell out too. The med worked so miraculously, I decided to buy a ponytail made of synthetic yet beautiful hair and treck on. Eventually, my hair grew back into thick, but curly gorgeous hair. Eventually, my normal, straighter hair took over. The psoriasis has not come back even close to what it was before.
Also, ibuprofen and naproxen are both hard on the tummy and thin the blood, acting in the same ways. One or the other is great.
I can't exercise either, and this brings me down all the time, but i've discovered i can do a bike at the gym and gentle yoga. i do feel better afterwards.
Bless you for being such a good mom and caregiver.
MTX does have some crazy side effects. The injectable MTX will eliminate the nausea and it's quite painless, it doesn't burn like the Biologics tend to. My Rhuemy also prescribes me Leucovor 5mg to take exactly 24 hours after MTX. She started me with 1 but I'm up to 4, mostly because she is having trouble accepting that I'm exhibiting symptoms of Sjogrens and that would mean the Orencia isn't working.
anywho, the Leucovor prevents the Fatigue, mouth sores and hair loss from happening.
Ask your Doc about it. And I hope she gets to feeling better soon.
I lost A LOT of my hair when I first went on MTX. So bad that I had to wear hats and scarfs to cover the loss up. Good news is for me my hair starting growing back in around 9-10 months of starting and I now have a full head of hair. I can also tell you that during the first year and half of being on MTX, I thought it would be better to die rather than go through what I was going through. I am so grateful it ended and today I am still on MTX when no real side effects. I have been on it for 7 years but I fully can relate to your post. I didn't have the psorisis either until a few years back when I came down with a strep infection that put me in the hospital for a couple weeks. I wish all the best and pray for better days ahead.
I considered all the side effects of all my meds, yet I have chosen quality over quantity of life. A dr. once said that pain shortens lifespan. Once she finds the right meds that work for her, she will start "living" again. You sound like a caring parent. =)
"Quality of life over quantity of life" - a good statement, especially at 21. Thanks for sharing, I will remember this.
Gelita said:
I considered all the side effects of all my meds, yet I have chosen quality over quantity of life. A dr. once said that pain shortens lifespan. Once she finds the right meds that work for her, she will start "living" again. You sound like a caring parent. =)
I noticed hair loss using MTX as well. I had an terrible time on MTX and would never suggest it to anyone unless as a last resort. I have a long list of side effects. The side effects from the pharmacist was very short compared to the list online of what ppl have actually experienced. The pharmacist and doctors seem clueless when it come to these side effects. Stiff and aching muscles, drowsiness, dizziness, memory loss, severe stomach pains, blurred vision...this list goes on. I couldn't function at work.
The folic acid didn't reduce hair loss either.
I'm now trying the sulfa meds ( used for colitis ) but they are upsetting my stomach. I have to keep the dose low...but it still seems to help a bit with the pain from PsA.
Everyone is different but these MTX side effects appear to be very common, despite the surprise of the doc.
They always warn you about all the side effects that a person could experience, but no one expects a person to get all the side effects from the med. Everyone reacts differently. Mxt. did not give me any side effects, ever, and I took high doses of it.
The only side effects I have gotten are appetite suppression and slight hair loss. Neither would I quit taking it for. It made me sick flu like symptoms for 1-3 days when I first started injecting 22.5 mg weekly about a year ago. Now it feels like I have a hangover for a day or two after the dose. Although I have had 2 times where I had no "hangover" I liked that!
Yes, it seems like Lauren gets side effects from most all medications. This has always been the case with her - just luck, I guess. We gave all of her doctors the information from "The Road Back" antibiotic treatment. I wonder if they will give it a try with her. Sometimes I feel like we are just grasping for straws in the hopes that some cocktail of meds and lifestyle changes will rid her of the pain. She has the terrible lower back pain that sometimes comes with PsA. I know that biologics are the next step if the doctors will not consider the antibiotic treatment path.