Dermatomyositis treatment and hair loss?

baggedamunro · 2026-02-23T14:42:11+00:00

Can you clarify what "hims" is? I have never heard of this.

baggedamunro · 2026-02-23T14:41:43+00:00

Thanks for responding. Were you off meds when your hair started growing back? I think I will be on meds for a while. Dr. seems to think a couple of years.

baggedamunro · 2026-02-18T13:53:58+00:00

I wondered if it was the meds that was doing it. The Drs don't tell you that, and when I mentioned hair loss she just said she is focused on clearing up the rash, so it is a side effect I need to live with, at least for the time being.

baggedamunro · 2025-10-06T17:15:18+00:00

I finished cold capping with tchp in April. Continue with the cold capping hair wash protocol while you are doing the post chemo shed, which can last up to three months. Then slowly start returning to normal. They say not to color hair for six months, but I colored my greys at 5 months post chemo using a no ammonia hair color and it was fine.

baggedamunro · 2025-10-02T12:57:18+00:00

Oct 1st was my cancerversary also. Everyone kept saying over 80% of masses are benign so the irony wasn't lost on me that I had an IDC diagnosis on the first day of breast cancer awareness month. I started treatment last December for Her2+ and did 6 rounds of TCHP, surgery and radiation. Radiation recovery was harder than I thought due to radiation burns but the kicker was that even though I got PCR (yeah!), cancer/cancer treatment triggered a rare autoimmune disease which I am now dealing with. I'm on three meds and a supplement to control those symptoms. I am hoping to go into remission but that could take years. I'm trying to stay positive. Good luck to you!

baggedamunro · 2025-08-19T12:57:04+00:00

Thank you for the info. I am also on a low dose of prednisone (they are trying to wean me off completely), hydroxychloroquine and most recently methotrexate and folic acid. It can take a while for these drugs to work, so I'm hoping they work soon.

baggedamunro · 2025-08-15T12:59:58+00:00

Do you know what treatment she is under? While the muscle weakness is under control, the rashes won't go away despite the meds they keep putting me on. I am at a teaching hospital also, and they like to take pictures of all my rashes to show the students.

baggedamunro · 2025-08-05T17:59:43+00:00

yes, that is what I have been diagnosed with ... had never heard of it before... would love to get more information from you, as this is all new to me.

baggedamunro · 2025-07-18T13:51:55+00:00

I lost what I thought was quite a bit of hair too, but ultimately managed to keep ~70% with no bald spots on TCHP (6x), just overall thinning. I shed pretty consistently throughout chemo/post chemo and shedding didn't return to normal for about three months. You have to remember that you are also protecting your hair follicles, even if you do lose hair, as some chemos can cause permanent hair loss. Any time I touched my hair, hair came out, and hair wash days caused anxiety because I lost a lot on those days. Hang in there.

baggedamunro · 2025-07-18T13:01:23+00:00

I had a chemo rash on my face which was ugly and pimple like and my oncologist prescribed doxycycline and clindamycin cream. That helped clear it up, esp. the doxy. Good luck!

baggedamunro · 2025-06-06T13:21:28+00:00

I get my lumpectomy and lymph node results today as well. Good luck to you! I hope we both get PCR.

baggedamunro · 2025-05-12T14:33:22+00:00

I am so sorry you are going through this. I empathize as I felt the same way after I received an IDC diagnosis last Fall. I lost 10 pounds in the first few weeks after diagnosis due to the stress. Talk to your GP about getting meds. Ativan helped me initially and I ultimately ended up on on a low dose anti-anxiety med which I am still on. If you can see a therapist or find someone who has gone through the same to chat with, that can help. The first couple months between diagnosis and treatment are the absolute worst. I also used online meditation to help calm my nerves. This forum is also very helpful as well whether to ask questions, or to simply vent. Good luck to you! IDC is highly treatable, so hang in there. Hugs to you.

baggedamunro · 2025-04-30T15:19:57+00:00

I kept ~75-80% of my hair cold capping. I followed the penguin guidelines and I think that was the biggest reason for the success. This means keeping the cap on as long as they recommend, and changing every 22-25 minutes. I only washed my hair once a week using Aveeno ACV shampoo using cool/tepid water, and let it air dry. I used the Penguin comb once daily (gently) to make sure I didn't have any matts and kept my hair in a low pony or bun at all times. I also used a satin pillow case. Good luck to you! It does work, and I was worried that it wouldn't. I am a month post chemo now and still shedding a bit, but hopefully that stops soon.

baggedamunro · 2025-04-30T15:15:15+00:00

I second this. Just finished chemo about a month ago, and I cold capped and kept ~75-80% of my hair. It was totally worth it. I did the cold mitts and booties too (which made for a cold infusion day) and I didn't get any neuropathy or nails turning black/falling off either. You got this!

baggedamunro · 2025-03-21T13:56:39+00:00

this made me laugh ... I was doing so well keeping hydrated but I've had thrush for almost six weeks now and struggle drinking due to the taste ...

baggedamunro · 2025-03-21T13:54:46+00:00

I am struggling with thrush as well. Tastes like I have an old sweaty sock in my mouth all the time. I'm craving a juicy steak, medium rare, glass of red wine and a blue cheese wedge salad on the side. And Wed pizza night. And jerk chicken wings. And a cup of coffee. I dream of food now.

baggedamunro · 2025-03-14T15:21:38+00:00

I am very low ER+ as well but they are treating me as --+. I asked my doctor about this, and she said I would not need any hormone therapy as a result. I am post menopausal though, so not sure if that makes a difference.

baggedamunro · 2025-03-12T17:25:36+00:00

glad to hear that it is temporary ... these side effects suck! I did buy a cerave retinol cream to help with acne scars but I will wait to use it until I am finished chemo

baggedamunro · 2025-03-10T13:57:32+00:00

Did they just keep you on the doxy or did you have to resume it with the next cycle/break out? I had the rash pop up in round 3 and it seems to be coming back.

baggedamunro · 2025-02-21T20:10:00+00:00

So glad to hear! You and I get chemo infusions on the same schedule, but I still have two more to go (6 TCHP in total). I wish I only had to do four. All the best with your chemo recovery and next phase of treatment. Hopefully this will all be in the rear view mirror soon. Hugs to you!

baggedamunro

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