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Starting Xeljanz, have some questions
I do have a question about dosage as this drug is new to my derm also. We are starting at 2 pills a day, but I wondered if anyone has taken three. I think the original guy increased to 3 after three months, but it will not last as long at that dose. Also I wondered if anyone is doing any other treatments along with Xeljanz. I was doing DCPC with little success, but my doctor thinks I should continue with it while taking the Xeljanz. Any thoughts especially from other oeople taking Xeljanz would be appreciated.
I will post any progress with the drug if it will help anyone else. I have had this condition for three years but just turned AU last month.
Replies to This Discussion
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Permalink Reply by Julie on
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I actually just started xeljanz and am using the Co-Pay card. I am doing the stanford trial and the dosage that is recommended for that is 2 pills/ day.
Very exciting about the insurance company covering it!!! How did your doctor get them to? Which insurance company do u have?
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It wasn't easy. My doctor wrote a long, very detailed letter about all the treatments I have tried without success and he included pictures of my progressive loss from AA to AU. My new insurance is Carefirst and they will only cover half. My old insurance, Kaiser, flat out refused.
Good luck with the trial. Do they monitor your bloodwork while you are on it?
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First, congratulations on getting the Xeljanz prescribed and covered! That was half the battle.
Secondly, I never heard of DCPC but I just did some research on it. It is a contact allergen, just like squaric-acid, which I have taken before with great results. The best way for these allergenic agents to work is by applying them, as early as you can, to new formed bald spots. For me, this regrew spots in a matter of 4-6 weeks. If you have extensive regions of baldness, it will work, you just need to be patient. My experience with squaric-acid was very positive. However, I didn't abide to the once a week regimen. As soon as the irritation started to go away, which typically peaked at 4 days, I would immediately apply squaric-acid again.
At the worst point, I must have been 75% bald. After doing a 2-3 month home remedy, I regrew 95%. This home remedy, to no surprise, involved irritation, which is a distraction to the immune system. I am a very strong believer in this method of treatment. My home remedy was to scratch the spots with a Scotchbrite pad, until it stung and was very red and slightly raw. Then I applied white vinegar, this burn was immense. I then applied a garlic paste that was made for me by relatives overseas (Jordan). I washed it off an hour or two later. Did this twice a day. Being 75% bald, you are at the peak of giving up on all hope you were ever able to sum up. But I never did, and you should have seen the look on my dermatologists face after he saw me when it regrew. Now, the reason it was 95% regrowth? Well because during regrowth, there were a few thinner spots than the rest of what was now fully colored and semi thick vellus hair. I figured it would catch up. Wrong. Over the last few years, I guess you can say I was stupid! I got complacent and used to the 5% missing, coming from 75%, I think anybody would be happy!
It very gradually crept up on me again, starting from those spots that I should have continued treating. And this time, a full time biology major with a girlfriend, I simply didn't have time. A couple of times I found new spots that were very small, maybe a dime in size. This is where squaric-acid kicked its butt! Find it early, irritate it. That is my tried and true form of regrowth of newly formed spots.
Anyways, sorry for the wall of text. To answer your question, I just got my squaric-acid prescribed again so that I can do both at the same time. My theory is simple. Pills have a half life. A 3 hour half life means that in 15 hours, your blood will be almost pure of the drug. I know we take it twice a day, but who knows what percentage of time is strongly inhibiting these T cells, and some of our immune systems are more stubborn than others so a specific dosage might take longer than it has for others. So my theory is: if the skin is constantly irritated while taking Xeljanz, I believe that the down time of the drug, if any (this is all theoretical), would possibly allow the return of these T-cells, therefore stunting the rate at which the follicles are awoken. Even if the drug is actively inhibiting those T-cells 24 hours a day, I would honestly suspect that adding irritation would be the equivalent of increasing dosage.
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Thanks so much Tamer. I think my dermatologist was thinking that also. Since it is a topical irritation there should be no danger in using it with Xeljanz. I think you are correct in applying it sooner than once a week. I am going to start applying it as soon as the irritation has subsided as you said. A week seemed like a long time to me and I initially had regrowth, but it kept falling out. What level of squaric acid are you at? I am using 0 4 which creates a little redness, but no blisters. Thanks again and good luck to you. It sounds like you are almost there. I am also a little concerned about what will happen once the Xeljanz is stopped or reduced as I do not think I will be able to stay on it forever.
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Believe it or not, I am at the maximum of 2.0% solution squaric acid. I had reacted to 0.8% but the irritation was minimal, atleast to my standard. I never blistered. However it does burn the next few days if I sweat. For me, this is a tell tale sign of you beating the immune system. You know the saying, no pain no gain.
I am also concerned about ending Xeljanz, my plan is to constantly monitor my scalp once I stop, and any new spots will be immediately treated with squaric acid. I am 100% confident that this will be effective. Catching it early and treating it aggressively has always worked for me. Good luck to you! I hope you have great success.
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Hello tamer,
I just starter xeljanz five days ago so haven't seen much of anything but I'm remaining helpful as I'm still early in the game. I was also using squaric acid prior to this with some regrowth. Have you been using both and if so have you seen good results? I think I may continue to use as well my doctor said its no problem
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I have health ins. through my employer which is Carefirst Blue Cross Healthy Blue. They probably have similar plans for individuals and Xeljanz is on their list of specialty drugs which means they are familiar with it. Hope that helps.
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It does, thanks. I also have Carefirst, so that's encouraging. Did your doctor need to submit a prior authorization or other paperwork first? Do you have a large copay?
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Yes, he had to fill out a pre-authorization form which was actually for rheumatoid arthritis, but he was honest about my condition and they still approved it. I do not have any copay, so they pay half of the total amount. He chose the pharmacy which is called source one in Columbia and they asked for the Xeljanz card to pay the balance and I still have a lot left on the card. They shipped it to me the next day, a three month supply, no charge.
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