Introduction by Trampledrosie

[Trampledrosie]

God, all these oral and biological treatments sound horrible. Was a bit disappointed that I can only find that one for pustular. Oh my.

Hi Rosie, I second comments of Fred and others, I also tried Acitretin which I think was worse than the Methotrexate and the range of other stuff including UVB therapy before I finally go to try Bio's. At this stage I have only tried two bio's. The first one Humira was only partially successful for six month or so, but the second one Cosentyx has been a total game changer for me and now five and a half years later it is still going pretty well with only a few small plaques and some fingernail P stating to appear. 

You can see my journey on Humira and lastly Cosentxy in the thread below if you are interested.

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Thanks! I will definitely check those out!

[Trampledrosie]

Since Fred pointed you to the thread on Acitretin I should add that shortly after I was first diagnosed I was prescribed Acitretin.  It was scary reading how I couldn't give blood for something like 3 years and that it could harm a fetus so not to take if planning to get pregnant.  I wasn't planning on that but I thought how bad is this to take if it could harm a fetus and stay in my system so long that they don't want my blood???    But the light therapy and topical wasn't working and the doctor at that time told me oral meds were the next step.  Basically it went, topical, light therapy, oral then biologics I think.  So I took it.  And I have to say it helped A LOT!  But I was a bit concerned on taking it.  When I was "better" I stopped.

But I do have to say that it helped me. 

Sadly I've had some flares since then and I didn't want to go back to Acitretin due to just not understanding what it may do over time.

Thanks Kat for sharing that. When I had cancer they couldn’t get blood or do IVs for my treatments because of my genetic tiny veins so I have a port in my chest. I kept it in so I can continue IV lidocaine for my neuropathy caused by chemo. The only nurses allowed to draw blood through my port are those at the cancer clinic. Now that I have finished treatment they can’t do bloodwork for me anymore. I only have one arm to use for blood, I’ve, etc because of lymphedema in one arm. The blood tests are going to be a big roadblock for some treatments so we’ll see what the derm recommends.

I dealt with lymphedema in my legs, no fun at all!  After being told by a doctor basically that I had to live with it I actually found a therapist that specialized in lymphedema.  Through a massage and wrap system I greatly improved!  Just mentioning this as although different (arm/leg and mine was not caused by cancer) and even now some doctors don't believe it helps but I do know it helped me.  Basically the massage helps the lymphatic system drain so less swelling.

That's rough having an issue with blood tests.  I don't remember having to have them for the Acitretin (years ago though so could have forgotten) but I do remember having to be tested for TB before starting last biologic.

I do a lot of lymphatic drainage on myself thankfully and have all the daily exercises plus compression stuff if it gets too bad. It flares after exercise and just using my arm either too much or not at all. Such a weird feeling. I’ve had it wrapped a couple of times but it was just too much. I definitely need to pay more attention to it though.