Hello and welcome!
How are you today?
Leslie Ann

Thanks, Starshine. I'll let you know what I find out. Have a great weekend!

Hi Starshine,
This is what my derm has been doing for me, too. Those scalp injections hurt. (I also get them in my brows.) I usually take a pain reliever before my appointment and it helps a little. I've been using Rogaine for a few years now. Have you used it before? I've used the 2% lotion, the 5% lotion and the 5% foam. Would you like me to share some of my thoughts on it with you?

Hi Starshine. My hairloss began with my eyebrows only. At that time I had the injections and they worked really well. The first time it happened I lost part of one eyebrow. I had 3 rounds of injections every 5-6 weeks and I had full restoration of my brow. That lasted about 6 months. Then, more fell out. I had the same injection routine again and they came back fully. Then fell out again. Not wanting to keep injecting every 5-6 weeks, I was told to try Rogaine liquid. It was 2% because that's all that's available where I live without a prescription. The prescription was very expensive so I tried the 2%. The liquid was messy and the 2% did nothing to help. Eventually I was told that 5% foam was safe to try, and that's it's available over the counter in the US. Since I have a family member who lives in the States, I had them pick up the foam. On my brows, I now use shots once or twice a year and I try to maintain using 5% Rogaine. I use the liquid on my brows because it is easier to apply there. I try to use it twice each day, but I don't like the way my eyebrow pencil looks when I use the Rogaine, so mostly I just use it at night before bed.

The effectiveness on my head has been OK but not quite as good. I started using the foam on my head a year and a half ago. At that time I was shedding and had a bald patch but only on my crown. After 4-6 months my hair stopped shedding, and by 10-12 months I had slightly better coverage. I had no injections in my scalp at that time. I added in Toppik to cover the stubborn bald spot and felt really good about my hair for over a year. Then, last June, it just started shedding again, but this time at the front and sides, too. Before that shedding started I had made two changes. I stopped using Nioxin Shampoo because it's expensive and I had read mixed things about it. (I now wish I hadn't stopped.) At my derm's suggestion, I also got a round of injections all over my scalp. I'm wondering if that set off something or if it was bound to happen anyway.

Some comments on Rogaine. It can add to the itchiness and discomfort of the skin on your scalp. Also, it takes up to a year of using it every day (my term said I should just use it on my head at night) before I noticed any difference. It really requires a lot of patience and dedication. For me it was worth it at the beginning, but I'm questioning its effectiveness now. My gut instinct is that it helps once your body goes into a remission stage, but when the AA is active - I'm not so sure. It might slow down the shedding process a bit.

I also found that I got small indentations at the site of the injections. This has gone away over time and was mostly noticeable to me.

Hope that helps a little. Let me know if you have any other questions.

I'm so sorry, Starshine. I didn't intend to make you feel worse, but I also didn't want to lie to you. I've had doctors talk to me in absolutes ("oh yes, this will definitely work") and then I'm even more upset when it doesn't. Everyone is different - this is just my experience. For a while things were much, much better for me on this regimen - maybe you'll have a reprieve, too. I hope you do.

I do use Rogaine only at night still. I plan to keep getting injections in brows but not sure about my head. Unfortunately, my derm's availability is very limited now so I'm not seeing him again until October! Till then it's just Rogaine and Nioxin. It is all very frustrating and confusing. Again, I am sorry if I made you feel worse, Starshine. Next time I share info I will choose my words more carefully. I'm stressed tonight because tomorrow I am getting my biopsy stitches out by someone (?) - I don't even know by who in my doctor's office since he won't even be there. Still waiting for my results. Hope you have a good night and that tomorrow is a good day for us both.

So, I had an awful morning. I went to get my biopsy stitches out - and that was painless and easy. But it turned out they had received my biopsy results. AA was confirmed. My doctor wasn't there to discuss it with me - they brought in another doctor who had to rush out to see her own patients. The only good thing was it meant they found a way to move up my follow up appointment to mid-September.

I guess it's a good thing that I have a confirmed result. But it sure doesn't feel like a good thing. Even though I expected that result, it sure is hard to see it in print.

Sad day for me today. Struggling not to cry and just to cope. Going away on a vacation tomorrow and don't even feel like going. :(

Thank you, Starshine. It helps a lot to know that you REALLY understand how I feel. I'm seeing my doctor on Sept 17 and it will be interesting to see what he says. When he did the biopsy he mentioned some more aggressive treatments like DCPC and oral prednisone. I am leaning away from using those but need to hear when he says first and then do more research. I'm glad we've become friends here and we can compare notes and get each other's opinions. They say knowledge is power - today I feel like that's kind of up for debate, though. Anyways, I appreciate your quick response and your support.

On another note, I think you have kids? How old are they and do they know what you're going through. I have not told my kids yet. The whole idea of telling them worries me. It might be easier once I have more info. I dunno.

Hi Starshine. Funny coincidence - I was sitting in my derm's waiting room when I read your post. It was a very long wait to see him and the results were mixed.

The biopsy showed that I do have AA. He said that he trusts the results with 98% certainty. He explained that the biopsy showed a lot of inflammation around the bulb of the hair, at the root, beneath the scalp. So the idea is to get the inflammation to calm down which should create a healthier environment for hair to (hopefully) start growing again. This means steroids and we had a long discussion on what sort. He would have liked to do steroid shots but he respected my belief that the shots last time POSSIBLY triggered this shedding - like a rebound effect. He actually said, "Most other doctors would say that's impossible and it's just coincidence, but I'll say it's a possibility...but a very, very small one." What we decided to do is increase the steroid lotion to 4 times per week and continue the Rogaine 5%. I've been having quite a bit of scalp pain so I really hope it helps.

I'm going to see him again for a follow up in 5 weeks. If the inflammation doesn't look like it has subsided, I'll be more willing to try the shots again. I'm really uncomfortable with the idea of oral steroids, so that would be a last resort, and he'd need to be really persuasive! So that's my story and where I'm at.

It made me feel so good that you thought about me and checked in! How are you feeling? I hope you've had some better days than the last time we wrote to each other.

D

Hi

I would love to compare treatment..I just went yesterday and I'm having some strands come in so the doctor is happy about it but I want it grown in yesterday lol....but we shall see....hope you have a good day! :)

I have been aa on and off for about 7 years but lost all the hair on my head about three years ago.. i lost most my arm hair and leg hair, eyebrows.. but grew my eyebrows back when i was on methotrexate for about 8 months. i stopped the methotrexate to go onto xeljanz and have noticed my leg hair coming back and my underarms but still the same vellus hair on my head.. no terminal hair yet and its starting to get me worried because like you said it just makes you wonder if it's not for you when you see so many people having amazing results only after a few weeks! im on week 10 of it so am hoping that within the next couple weeks i see something.

i am getting the xeljanz through cvs using the pfizer copay card. that is up in two weeks os currently my dermatologist is trying to work with my insurance to get some of it covered. i may try to go through a rheumatologist if that doesnt work.

how about you?

Hi, I have some questions about your insurance coverage. I have BCBS Carefirst insurance, but they just denied my claim for Xeljanz. I was wondering if you maybe elaborate on your approval process, or what your doctor specifically wrote or told the insurance company. I'd really appreciate it.  Thanks so much!