Posted , 2 users are following.
It would be useful to learn from peoples experiences on what has worked for them. Has anyone been able to prevent joint damage with traditional DMARDs, or have people used Biologics over a long period of time successfully?
2 likes, 7 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
CA-Lynn david12607
Posted
hope4cure CA-Lynn
Posted
thanks for sharing.
cheers
hope4cure david12607
Posted
I have PA for many years. Tried DEMARDS they made me very sick. My hand r curled all my joints r effected. I have had 3 hip joint replacements surgery and still mobile.
I have read up on many biologicals for Psoriatic arthritis.. I remain a bit apprehensive.
My dr has asked me about bio drugs. I just don't feel comfortable. They have so many side effects. I have read where they help for a short time then the drug stops working. Then a switch from Humira to Stelera helps some. I am not interested in bios right now. There are many new biologicals on the market and stem cell research sounds promising.
If the some of risk factors were lower I might try it. There isn't much to worry about from low dose MTX treatment is required by most ins. Co. first before trying Humita. Have u tried MTX. MTX has been around for a long time. Then once MTX do not help PSA then movin on to expensive bios is the protocol.
Some doctors require a liver biopsy every so often with MTX. With bios it is required. You will probably have to be on MTX for 1-3 months before you can get on Humira. Liver biopsy's r required on Humira too. The dose will likely be small at first. Remission is what we need from this disease. Many bios do help a lot of patients in the clinical trials I have read.
Their r liver risks from the biologics too. There's the reactivation of some version of hepatitis, there's auto-immune hepatitis (very rare and probably reversible),rare blood cancers have shown up and when tested on groups in clinical trials on liver function, these bios tended to increase their risk of dying becuz they shut down the autoimmune system and the patients were suspetable to rare and unusual diseases. Therefore those patients were taken off bios. That's what I remember from Humira Stelara and Enbrel's trials before approved for the market.
Mabe to ask about the injection site issues patients may have and side effects patients can share with u as well as how long did it take to go into remission on a biological drug, and how long did remission last? Did the injections of biological drugs improve quality of life and for how long?
Everone is different whatever u decide is what's right for u. I wish u the best. U are much braver than I.
CHEERS
HOPE
KupKake david12607
Posted
david12607 KupKake
Posted
With respect to your concerns about biologics if you have the time please look at the inspire forum and information provided by AnnaPsa. I feel it puts a lot of the fears of biologics into context. Please remember all drugs have risks and i have a personal view that the concerns regarding biologics, all be it they exist, are also misrepresented. Please let me know how you get on.
CA-Lynn david12607
Posted
I think perhaps this thread overlaps another thread, so I'm coy/pasting my comment here:
David,
I was diagnosed with PsA about 22 years ago here in the US. Later I would also be diagnosed with sero-negative Rheumatoid Arthritis and Ankylosing Spondylitis.
The standard first line treatment back then was Methotrexate [DMARD]. They started me at 5 mg [pills] and graduated the dose over the next month until I was on 10 mg. Over the years the dose was increased gradually. It halted the progress of the disease.
Back in the early days we didn't know about taking folic acid, but that was added eventually.
By year 15 on MTX it seemed to not be as effective. I was at the 25mg dose, which is typically as high as they'll go. The body builds up a tolerance over time to drugs so the effectiveness goes down.
By this time biologics had been out for a number of years, but due to other medical issues, biologics like Enbrel and Humira were contraindicated for me.
I struggled with increasing joint pain and inflammation and turned to getting Kenalog [steroid] injections in the joints, which was a lifesaver for me. But still, it never really eradicated all the pain and inflammation.
I should mention that I never took systemic Prednisone pills. I did, and still do, take NSAIDS; I'm a huge fan of Celebrex. Over the counter pills like Tylenol, Aleve, Ibuprofen are a waste of money in this disease.
Finally, three years ago, I decided to gamble and try the Humira. It was a gamechanger. I feel better now than I have in over 20 years.
I'm a member of other RA and PsA forums and many people who go on the biologics have the same experience I do - excellent quality of life comes back.
Then there are those who can't seem to catch a break and rotate drugs just to find the right one.
I want to bring home one point: so many people do so well on biologics and even DMARDS such as Methotrexate that they don't bother posting on forums. So what you see are forums filled with members who are desperating seeking relief, which pretty much gives the impression that ALL people with the disease are doomed [because the successful patients are nowhere to be found on these forums].
I make it a point to post my successes with the drugs here so that people newly diagnosed can see that the drugs DO WORK in the vast majority of people.
I have to tell you that since I started the drugs over 20 years ago, I've had no further joint damage. The drugs are responsible for that.
No one knows yet what the very long term effects are, since the biologics have only been out about 10+ years. I have heard of people who enjoyed great success on a biologic for several years and then it stopped working. Most of those people switch to another biologic and most have success repeated. But at this point I don't know that anyone can say with accuracy exactly what the very long term remission probability is.
david12607 CA-Lynn
Posted
Thank you for your insight, it's great to hear how well you are doing and have done with the use of MTX prior.
In the UK the main concern I would say is the lack of a consensu in the medical community when it comes to diagnosis and first line treatments. However, I have found some of the leading clinical academics very informative regarding today's treatment options and those on the horizon for P&PA.
As a layman, it's difficult to understand why medinces just stop working. A chronic condition like P&PA , in my view, is no major challenge when the treatment is keeping it in check. Until there's a cure this is a goal I feel we can all aim for.