Glenda's journey with prescribed treatments

[glenda grant]

Having psoriasis psoriatic arthritis has really been a challenge to say the least.As i said before i had the psoriasis long before I knew it.I had what I thought was dandruff during my teenage years and my nails were always weak.I didn't have pretty nails like the other girls at the time.Plus I used to bite them.About 9 or 10 years ago my scalp was so bad I went to a Dermatologist and she said I have Psoriasis and I had about 20 steroid shots in my scalp.Talk about painful but I got thru it.I showed her my knee which was double in size and she told me she thought I has Psa on top of the skin issues.So i started to see a Rheumatologist and sure enough I have both.They call it a double whammy just my luck to have both!I had tried all kinds of pills to help me but nothing seemed to help.One time was on Clinerol don't know how to spell it.Was generic for sulfasalazine and my hands swelled up like baloons from it.My Rhemmy was on vacation so I went to the ER they gave me a steroid shot plus steroid pills you take 7 day pres.and you keep tapering down.Was on Cymbalta,Lyrica.Celebrex and nothing helped finally the Dr said well Glenda looks like it time for biologics.Started out on Remicade was on it for about 8 months then I broke out in hives last Jan,not bad thought it was from a food allergy.March had another infusion hives again.Thought it was something else.Then May 1st had another infusion ended up in the ER.could't breathe they gave me an IV coctail of steroids,benadryl,pepcid.Finally figured it was from Remicade.So now I am on Enbrel for the past 3 months and so far so good.My PSA is better I am hoping after a while I'll see improvements in my skin.Keeping my fingers crossed.I try to go to the tanning bed a couple times a week not for the tan but to help with the psoriasis.I only stay in the bed for 7 minutes scared of getting skin cancer.Will keep all informed on my progress with Enbrel.

[jiml]

Thanks Glenda that was a good description of your journey through this disease. It certainly seems as if the various treatments have had mixed results... I'm so glad the enbrell is starting to work for you and thank you for telling of your experiences ( the remicade one sounded very unpleasant ) I also noted that sulfasalazine was a nightmare for you I remember another member having a violent reaction to it as well.
Thanks again
Jim

[glenda grant]

Thanks Glenda that was a good description of your journey through this disease. It certainly seems as if the various treatments have had mixed results... I'm so glad the enbrell is starting to work for you and thank you for telling of your experiences ( the remicade one sounded very unpleasant ) I also noted that sulfasalazine was a nightmare for you I remember another member having a violent reaction to it as well.
Thanks again
Jim

Jim yes it's been a journey with me.What may go wrong will go wrong with me<but then again no one ever said life would be easy.I am thankful to wake up each morning.Beats the other alternative and I'm not ready to be dead just yet.There were alot more meds I was on but can't remember them.I was on methotrexate I reallydidn't have problems but I had a high liver count.So I got off of it.I am praying Enbrel will eventually help my skin.I will give it time as Fred said.

[Caroline]

Hello Glenda,

Thanks for your story. It has been heavy for you. But I also see that your spirit is strong on continuing .
Personally I think you are in the good direction with the Enbrel with other possible biologicals on the background, so keep on going ! I hope things will become better and better now for you.

Caroline

[Fred]

Good luck with the Enbrel Glenda, I have changed the title of your thread to "Glenda's journey with prescribed treatments" I hope you don't mind but as this board is titled "Prescribed Treatments" I thought it may confuse some readers.

[Quest4Cure]

Hi
Ther's no one size fits all treatment for this disease. There seems to be a lot of new science 
On this disease. And many big pharm companies r on the band wagon. I have read a lot of clinical trials. When faced with a decision to try bio grugs can be overwhelming.

My best suggestion is to read as much as u can and find all the medical clinical trials on any new biologic.. Some have more side effects that others. Sometimes we must find the way thru all the adds we see on tv showing happy people playing golf or swimming ... All the while the side effects r mentioned and they r not pretty.

I hope that as these new bio drugs gain more experience from P. Patients on the market , then we will have better info . Until then if Nyone can join a clinical trial at a any teach hospital in their area. That is a good opportunity to learn first hand about these bio drugs. 

I would like to propose that a special section be devoted to volunteers in aclinical studies. 
And also a special topic on all the drugs available on biological drugs from members who have taken these drugs who can share their experience. Label each form just for those discussions.



The positive reactions & the different side effects to many is a big issue. I believe talking about how these drugs effect members will help many of those when nothing else has worked and give info not just directed to the remission seen on tv info, but also  from members here sharing their experiences can help be a guide and inform those in the middle of these decisions.

Searching around this forum for past discussions may not be updated.
Most of the bio drugs r very difficult to decide on & to know the side effects. Yet everyone reacts differently to medication.

The newest bio drug just aproved by the FDA here in the states has the least side effects and shows to be very promising in shutting sown the pathways in the immune system. IL-17 is an example of one pathway thru which P has been identified and the bio drug is designed to shut down that at hay.

It's so overwhelming that's why it is so very important to have confidence in UR doc.

That's my story & I'm sticken to it. I will try a new bio once my insurance co approves it. They r very expensive even with insurance it's costly. I don't think I can put a price on it if a new bio drug will stop the damage already done to my fingers from PSA.

I hope u have a really good derm... I have seen mine for years. I know the new bio drugs coming down the pike the at few yrs will be worth the cost and giving it a chance. I can always stop taking it any time.

My biggest issue is it's really difficult to Post before & after pics of using these drugs.
Why can't we use existing pics  I would like to post a pic of my hand. These are on my existing Photostream some system used on posting our forum ID, PICs.

It would be wonderful to post pics on this the same way we use existing pic. it's easy only take one step. And I like to communicate with pics. The old saying one pic is worth a 1000 words.

Hope existing pics can be added to posting soon. So many forums use this version. 

If life gives you a set back, then don't step back, God is preparing you for a come back !

[Quest4Cure]

NO LINKS ALLOWED U must coyn@ past on bar
My hand pics r on my Photostream not kliker,which had THR YRLY requested.
Now you have to copy & paste. Is there an easier way.?

I wud like to post directly from my photo streanous where my hand pics are.

I may be missing the boat. I use Apple IPad type with a stylus only way I can without fingers that don't work.

Sometimes I dictate to Suri a Ardis process to say the least.

Really need a easier way to post pics.

THANKX.

[Fred]

@Quest4Cure I don't get chance to read every post on the forum, and without taking Glenda's thread to far off topic I will try to give you some information that may help:

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You can post images.
See here: [Group Specific]
Caroline has also made a thread about using Flikr here: [Group Specific]

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A special section devoted to volunteers in clinical studies wouldn't work in my opinion as we've had people start threads but they never update, and I don't allow recruitment of our members in studies as we have had so many scams in the past. Members are always welcome to start threads about registered clinical trails they are taking part in.

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Re your mention of a special topic on the Bio's , there is one here: Biological Treatments For Psoriasis and again all members are welcome to start a thread about their bio treatment and some do put their treatment in their profiles which helps others find them.

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I hope that has helped answer some of your questions on using the forum, but for future reference it may be better to start a new thread in one of the following as I will spot it quicker and be able to offer an answer.
Feedback
Help using the forum

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Sorry Glenda for taking your new thread off topic

[Kat]

Glenda, it's definitely been a journey for you! I hope the Enbrel works for you and helps you to clear.

[glenda grant]

Good luck with the Enbrel Glenda, I have changed the title of your thread to "Glenda's journey with prescribed treatments" I hope you don't mind but as this board is titled "Prescribed Treatments" I thought it may confuse some readers.

Thanks Fred for the help I am new at this and I really appreciate any help!!!