Introduction by Trampledrosie
#31
(Wed-29-05-2024, 15:57 PM)Fred Wrote:
(Wed-29-05-2024, 15:09 PM)Trampledrosie Wrote: God, all these oral and biological treatments sound horrible. Was a bit disappointed that I can only find that one for pustular. Oh my.


I've only ever had a problem with Methotrexate which is poison in my opinion. I've tried about 8 different bio's now and apart from having a reaction to one, I've never had any serious problems.

You have to remember all treatments have their bad points as they are messing with your naturel immune system, and though the warnings don't sound nice it's very very rare to get any lasting bad effects.

I'm a big fan of the Bio treatments as they gave me back my life, read some others threads about using bio's and you will find a lot of happy people.

Some others may work for pustular by the way. Give them a go, you can always stop if it doesn't work.

A quote from Wooley's thread. [thread=6094]

Quote:
Ok so I saw my Derm end of Feb (who is a specialist in Palmoplantar Pustular Psoriasis incidentally), and he has said that it looks like my psoriasis (albeit a rare one by comparison) has gone into remission!!!!!
Thanks, Fred. Trying to stay open minded
#32
(Wed-29-05-2024, 19:58 PM)Trampledrosie Wrote: Thanks, Fred. Trying to stay open minded


The way to go Rosie it's your body and only you can decide the best way forward, we can only give our opinions but you at the end of the day have to make the decision.

But as I think you have already found out ....................................... we are there for you if needed. Smile
#33
I'll be honest, I find most medicines to be scary. Here in the US we get ads and biologics are a lot of the ones we get. I'll make one up to give the idea:

Tell your doctor about WonderBio2000. 80% of patients had clearer skin in 4 months, 2% had almost totally clear skin. Side effects include nausea, headaches, acne, swelling and crankiness Tongue Only a couple of people died while taking this and a small percentage will never be the same. Don't take if you are pregnant or have kidney, lung, heart or liver issues. Not for children under the age of 35 Tongue ... etc, etc.

I get that one person may have had a bad reaction and their legal team and/or government requirements are such that they must report this to consumers. But it's SCARY to hear and/or read! One bad result will stand out more than 100 good results I think.

All we can do is our homework (here is a great place for that!) and question doctors as to WHY they think a medicine is suitable and then decide if it's worth it to try or not. Obviously if we fall into that "bad results" category then it's best to not take it. The problem is most of the time you won't know until after taking it. Confused
#34
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.
#35
(Wed-29-05-2024, 22:55 PM)Kat Wrote: Tell your doctor about WonderBio2000.  80% of patients had clearer skin in 4 months, 2% had almost totally clear skin.  Side effects include nausea, headaches, acne, swelling and crankiness  Tongue  Only a couple of people died while taking this and a small percentage will never be the same.  Don't take if you are pregnant or have kidney, lung, heart or liver issues.  Not for children under the age of 35  Tongue ... etc, etc. 

85
#36
Be careful if your shower or bathtub gets slick as you use moisturizers more.  Mine did, and I fell in the shower a couple years ago!  It really hurt for a long while.  (Now I'm a lot more careful to keep the floor of the shower scrubbed clean and to keep my balance.   Blush )
#37
(Wed-29-05-2024, 23:09 PM)Kat Wrote: 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.
#38
(Thu-30-05-2024, 14:09 PM)Forest Walker Wrote:
(Wed-29-05-2024, 22:55 PM)Kat Wrote: Tell your doctor about WonderBio2000.  80% of patients had clearer skin in 4 months, 2% had almost totally clear skin.  Side effects include nausea, headaches, acne, swelling and crankiness  Tongue  Only a couple of people died while taking this and a small percentage will never be the same.  Don't take if you are pregnant or have kidney, lung, heart or liver issues.  Not for children under the age of 35  Tongue ... etc, etc. 

85
I’m in Canada so we are late to the party when it comes to some of the WonderBio2000s. I do find some of those commercials hilarious. Sure, ask your doctor about this thing that no one can really take because of the side effects or existing conditions. Then the next commercial is about some big lawsuit against some crazy drug.
#39
(Wed-29-05-2024, 15:09 PM)Trampledrosie Wrote: 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.

[thread=5634]
[thread=5913]
#40
(Thu-30-05-2024, 17:51 PM)Trampledrosie Wrote:
(Wed-29-05-2024, 23:09 PM)Kat Wrote: 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.


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