My Journey to halt/end my psoriasis

[Sheila]

*SIGH* I was hoping things would go better, but....it seems the Enstilar is starting to lose it's effect. What were, mere weeks ago, elbows that were CLEAR, are now leaving skin flakes behind. I have been applying it faithfully now for just over 2 months. My biceps area are sprouting new scaly areas that weren't there prior to using Enstilar even. I have been totally loving the clean and clear look. I almost forgot I had it because my arms were so clear. Thankfully, there is no itch....yet. Wondering how long it will take for the med to totally lose it's effectiveness and I am plunged into Psoriasis Hell.

[D Foster]

*SIGH* I was hoping things would go better, but....it seems the Enstilar is starting to lose it's effect. What were, mere weeks ago, elbows that were CLEAR, are now leaving skin flakes behind. I have been applying it faithfully now for just over 2 months. My biceps area are sprouting new scaly areas that weren't there prior to using Enstilar even. I have been totally loving the clean and clear look. I almost forgot I had it because my arms were so clear. Thankfully, there is no itch....yet. Wondering how long it will take for the med to totally lose it's effectiveness and I am plunged into Psoriasis Hell.

You really could do with a biological like Stelara.

[Sheila]

*SIGH* I was hoping things would go better, but....it seems the Enstilar is starting to lose it's effect. What were, mere weeks ago, elbows that were CLEAR, are now leaving skin flakes behind. I have been applying it faithfully now for just over 2 months. My biceps area are sprouting new scaly areas that weren't there prior to using Enstilar even. I have been totally loving the clean and clear look. I almost forgot I had it because my arms were so clear. Thankfully, there is no itch....yet. Wondering how long it will take for the med to totally lose it's effectiveness and I am plunged into Psoriasis Hell.

You really could do with a biological like Stelara.

Anything stronger has to have a specialists prescription. I saw his intern some months ago and she told me outright that the next step is methyltrexate, so stelara is not in the cards at this point. I have heard of people being on this med for 10+ years and have had clear or near clear results. Personally, I fear the side effects the most. I know that the drug is a limited dose sorta thing so that people can tolerate it pretty well. But still, the side effects kinda concerns me. Well...concerns me alot is more like it. But if that is my path, then I will face it head on and see where it goes.

[Forest Walker]

Within your healthcare system, are you able to refuse a medication? Is it difficult to see a different doctor?  Patients are more informed, now, than a few decades ago.  I hope you have a voice in this.  It was an intern who told you MTX was next step, possibly an intern who has not yet learned to listen to a patient's concerns.

I'm sorry you're building a tolerance to Enstilar and having even more new scales appear.  I think the topical steroid is the culprit for the rashes spreading.

I'm taking augmented betamethasone, which is one of the ingredients in your Enstilar.  And I used it from April to August until I had thinning skin and bleeding.  I also had new rashes appearing beyond the original.  Then I quit, suddenly.  (I learned here that you are not supposed to quit suddenly.)  More new rashes appeared.  While trying to help with diet and coconut oil only, they worsened badly.  Now I'm using it, again, only for a short while (1.5 to 2 weeks) and will try tapering off. 
 
Keep up your good work on the dietary changes.  Your other body systems beyond your skin are benefitting, too.  You are inspiring!  

[Caroline]

Anything stronger has to have a specialists prescription. I saw his intern some months ago and she told me outright that the next step is methyltrexate, so stelara is not in the cards at this point. I have heard of people being on this med for 10+ years and have had clear or near clear results. Personally, I fear the side effects the most. I know that the drug is a limited dose sorta thing so that people can tolerate it pretty well. But still, the side effects kinda concerns me. Well...concerns me alot is more like it. But if that is my path, then I will face it head on and see where it goes.

From my side you will never hear anything positive about methotrexate. Sorry.

[D Foster]

I was on Methotrexate for around 10 years with the last three or so years on an injection. If you do go ahead with it try to get the injection rather than the oral tablet. The only real side effects I had was stomach upsets and that was with the tablets, it worked reasonable well for me though I didn't get complete clearance by a long way. When you're on the oral dosage I found that you had to be very careful what you eat, what I mean by that is anything that was even slightly off such as cream ,cheese in fact dairy products in general that looked okay but had probably stood for a while and was fine for everyone else could really upset your stomach in a big way. The injection was much better though you still can have a few problems with it but I had nothing major until I had been on it for around 10 years collectively.
Stelara, for me,was fantastic and apart from a little bit of psoriasis in my ears I was clear very quickly and I haven't looked back even again after getting on for many years now. Just to make another point, it's not wise to drink alcohol on MTX. Try it out and see how you get on you may be pleasantly surprised.

[Sheila]

I was on Methotrexate for around 10 years with the last three or so years on an injection. If you do go ahead with it try to get the injection rather than the oral tablet. The only real side effects I had was stomach upsets and that was with the tablets, it worked reasonable well for me though I didn't get complete clearance by a long way. When you're on the oral dosage I found that you had to be very careful what you eat, what I mean by that is anything that was even slightly off such as cream ,cheese in fact dairy products in general that looked okay but had probably stood for a while and was fine for everyone else could really upset your stomach in a big way. The injection was much better though you still can have a few problems with it but I had nothing major until I had been on it for around 10 years collectively.
Stelara, for me,was fantastic and apart from a little bit of psoriasis in my ears I was clear very quickly and I haven't looked back even again after getting on for many years now. Just to make another point, it's not wise to drink alcohol on MTX. Try it out and see how you get on you may be pleasantly surprised.

I don't drink. I use alcohol in marinades and in certain recipes like beer bread....or at least I used to until I laid off the gluten. I am gonna have to see how it reacts to rice flour and if I can get a decent bread out of that. Same thing with sourdough. I was heavy into the gluten as you can tell because a used to bake a tremendous amount.  Now, not so much. At least not until I can see how well rice flour will react in recipes. Cutting it out has greatly reduced my calorie/carb intake though and I am enjoying that experience. I rarely miss it at all. Again, I have to say I am concerned about the upset stomach issue. I can't afford to not be able to eat because of nausea. Ozempic has asserted itself and I commonly get upset stomach because I eat too much and I am only eating a saucer full of food per meal and sometimes not even that.  I owe a large amount of success in my weight loss in the lap of Ozempic. I am not sure I could handle a constant stomach upset. Anyways, I thank you for your input. I will certainly talk to the doc about the injections, though.

[Sheila]

Within your healthcare system, are you able to refuse a medication? Is it difficult to see a different doctor?  Patients are more informed, now, than a few decades ago.  I hope you have a voice in this.  It was an intern who told you MTX was next step, possibly an intern who has not yet learned to listen to a patient's concerns.

I'm sorry you're building a tolerance to Enstilar and having even more new scales appear.  I think the topical steroid is the culprit for the rashes spreading.

I'm taking augmented betamethasone, which is one of the ingredients in your Enstilar.  And I used it from April to August until I had thinning skin and bleeding.  I also had new rashes appearing beyond the original.  Then I quit, suddenly.  (I learned here that you are not supposed to quit suddenly.)  More new rashes appeared.  While trying to help with diet and coconut oil only, they worsened badly.  Now I'm using it, again, only for a short while (1.5 to 2 weeks) and will try tapering off. 
 
Keep up your good work on the dietary changes.  Your other body systems beyond your skin are benefitting, too.  You are inspiring!  

Hi Forest!
Yes I am able to refuse meds. As far as another doc, I would have to travel 2 hours east to Winnipeg to see another Derm. As far as the listening goes, I felt that the lady intern I saw listened very well. I refused outright to use duobrii because it was a steroid. She then informed me that she couldn't do anything more for me and that I would have to see the only dermatologist that is local. Had an experience with him before that didn't go all that great.  Anyways...I thank you for your kind words. I strive to be as transparent as possible in hopes that my journey, with everyone's help here, will be a learning experience for all to learn from.

[Turnedlight]

Don’t forget, though they want you to work through the drugs in order (personally I think they should remove methotrexate from the list) if you can’t tolerate it they will have to move you to the next med. So, if you do get stomach problems or some other side effects, you can tell them it’s intolerable. If you don’t, well you may actually find it not so bad especially as it does control the psoriasis.

Me, I thought I tolerated it ok but after I stopped I realised it was ‘zombifying’ me and I felt much more alert afterwards. fortunately for me it just stopped working anyway so there was no point continuing.

[Caroline]

Don’t forget, though they want you to work through the drugs in order (personally I think they should remove methotrexate from the list) if you can’t tolerate it they will have to move you to the next med. So, if you do get stomach problems or some other side effects, you can tell them it’s intolerable. If you don’t, well you may actually find it not so bad especially as it does control the psoriasis.

Me, I thought I tolerated it ok but after I stopped I realised it was ‘zombifying’ me and I felt much more alert afterwards. fortunately for me it just stopped working anyway so there was no point continuing.

I totally agree with TL. If you would get it, be very alert to symptoms. MTX is an overall and strong immuno suppressor. This can be seen in the result of the Covid jabs. People using MTX have a significantly lower respons in creating antibodies for Covid.
Me too, I would leave it out. And my experience with it was much alike TL’s and totally different from Dave’s