My daughter contracted Brown's Syndrome - the thought is her PSA is causing the tendons to swell in her eye. Her rheumy wants to start her taking Humira. This will be Lauren's first time on a biologic.
Lauren's concern is that she may develop psoriasis from using the Humira. Has anyone found this to be true? Right now, she does not have psoriasis......but back, jaw and overall pain - and now, the eye.
Thank you!
Karen
Oh, how miserable for her. When we say that this disease can affect so many more parts of the body than just the joints, we’re not kidding, are we?
I don’t see why Humira would bring on psoriasis, when it is used to treat people with psoriasis. But should it set something off (looking at the worst, but unlikely scenario), stopping Humira and switching biologics should then fix the problem.
Karen, your daughter was diagnosed a while ago. What treatments has she had up until now? Has she been offered a biologic before, and if so, what were her reasons for not taking it? I’m just trying to understand where Lauren is coming from.
I have never heard of Humira causing psoriasis but have heard of it treating it. Does she see a dermatlogist? Psoriasis can be a tricky one to find. It imitates lots of other things. Some people who swear the do not have it are surprised to find, after visiting a good dermatologist, that they had it all along. I have inverse and guttate psoriasis and they do hide in odd places.
Hi, just thought I'd add this comment to the discussion. My doctors and rheumy have told me that the Humira is to treat the pain associated with psa. The methyltrexate is what treats the psa deformations and tries to slow the progression of the psa. With this line of thought, your theumy would be correct to suggest going to Humira as I have found it remarkable in the way it switches off the pain of psa. Humira was designed to turn off the T-cells inside us thus blocking the pain receptors in our bodies.
Lauren has been told my "well-meaning" adults and friends that she should stay away from biologics for as long as she can - she just turned 23. My thoughts......she keeps going to narcotics for pain (with the prednisone and ibiprofen keeping her swelling in check) instead of being willing to go the route of a biologic. She now knows that she is layering a problem on top of another problem. Honestly, I just feel like she is only going to do what she is ultimately ready to do. I just stand by - offer support and "what I would do" if it were me. One person nailed it on the head - she is watching her friends set goals, achieve them - start their lives. She is just trying to control her life at this point - wondering what her body will do next. Thanks for your suggestions.
It’s so, so difficult. We aren’t in the middle of her storm, and it is a storm, of physical and emotional turbulence. From the middle of that storm, it is difficult to make really sound decisions. I am so sorry that Lauren is going through this. As you say, we can only stand by and offer “what I would do”. And the “well-meaning” adults and friends are doing that too.
I’m just wondering how long she will be able to continue to get prescriptions for narcotics and prednisone, both of which have enormous risks attached to them. Who is providing these?
23 year olds I understand, the DD 15 year old with PsA who lives with me I don't. She woke me up at six this morning with our "kit" informing me its MTX day........ Her condition is quite severe, but she needed things out of the way because its fishing day.
Laurens job as 23 year old is no different than anyother 23 year old and trust me if she thinks her friends have it together, she needs to think again. Perhaps we could hide her in the corner of my office for a bit as these kids come trailing through. There is no convincing them BTW. I will tell you this though, if she is depending on predi and narcotics, she needs a serious call to attention and new friends/advisors. There is no way that approach will end any anything but severe health problems and a life time of pain. I know I am supposed to be kind supportive and all of that, but I have got to say it the only way it can be said. Unless she embarks on the most aggresive treatment available devotes a fair amount of time to physical therapy, for the next while she has little to no chance of the future she is concerned about. She will never have a meaningful relationship, she will have few friends, a crapola career, and will dependent on someone/some program for the rest of her life. These well meaning people telling her to put off treatment, are in effect telling her to put off her life. They need to tell her when she is supposed to start living, and why she should wait. Its like the ass I fired telling me a joint replacement only lasted 15 years, so I should put it off. The ninny couldn'tell me why I should be the most spry old man in the nursing home.
Most 23 year olds are cluless (and I’m dealing with future docs) They talk a great battle, but they really want to have plenty of money, hook up (or shack up) party a bit, brunch etc etc. They have had20 years of school, 15 of it with days longer than most working folk will ever put in with demands that would make any of us walk from a job. (Think about a school day, homewrk, teachers, coaches practices, lessons etc etc) A 23 yearold for the first time can tell everyone to go pound sand. Fortunatly most don’t
Laurens job NOW is to get her disease under control. Its not that hard in the early phases, there are many diseases worse, well over90% of us live very normal lives. It requires meds, exercise, and healthy living. Anything that interfers with that will take us backwards.
Best of luck to you. Incidentally, this is the MOST difficult time of parenting. Its sort of like running a marathon. Finishing is the hardest.
/p>
I am going to agree with tntlamb on this one. My previous doctor kept me on prednisone and narcotics for almost 5 years. The pain was still there regardless of the dosage. The dosage just made my head drowsy so I didn't concentrate on the pain. It's when you start on the right treatments, Humira etc, that you really understand the difference. Everything then becomes manageable. You can start to plan your way back to good physical health. You can start to think about the next big event in your life knowing you can manage to do it with a clear head and with minimal pain. I urge you to remain persistent with your daughter that she start the biologics. She will be so thankful you did in the long run.
I take Humira and have had no problems with Psoraisis (I had a couple of tiny patches on both knees and elbows prior to diagnosis, but they were gone by the time I got any treatment). Both Enbrel and Humira have been lifesavers for me.
Humira (and the other biologics) are biological DMARDS - disease modifying drugs - which means they prevent the damage and deformity caused by the disease. Prednisone and NSAIDs are not.
The sooner your daughter gets on a medication that prevents the damage to joints, bones, tissues, the better her long-term function is likely to be. At the present time, the biologics show the best ability to prevent this damage in PsA.
If she's lucky, like me, Humira will also substantially reduce all the associated pain, swelling, brain fog, and depression that can be a part of our gift of PsA. I got to these before any major damage to my joints, and my life is 90% normal - I go to the gym twice a week, play with my 4 year old, travel to a camp in remote Africa for a few weeks 6 times a year for work. These things either I couldn't do, or were quite hazardous, when I was on prednisone and NSAIDs (prednisone in sufficient quantities to control my symptoms makes me very susceptible to getting quite sick from infections - despite the hype of Humira making people susceptible, it seems to depend on the individual - I've come through Dengue fever and Salmonella on Humira with no more effect than before I got PsA).
Your daughter's well-meaning friends and relatives won't have to live with the possibility of a future with limited function and without all those things she hopes for. She will, and as her mother, I know you will too. Get armed with good information, and help her make a good decision for her and for your family.
Humira does not cause psoriasis and there is absolutely no information in the form of studies that says that it will. Also, any anecdotal tales about that are easy to explain. People with PsA often 1) Have psoriasis or 2) Will have psoriasis 3) May never have psoriasis. Our condition sort of comes with both, usually. But, what often happens is that someone will be diagnosed with PsA, start meds, then have their first outbreak of P and blame it on the medication. They would have gotten it anyway. It’s just another case of correlation not equalling causation.
I am so sorry that your daughter has “well-meaning friends and family” :-(. They really don’t understand. PsA is a complicated illness. Treatment is complicated, diagnosis is complicated, everything is just so complicated. That is why the advice of people who have no business giving advice is just so harmful. Misinformation can really hurt someone.
She needs Humira. It can be a wonderful drug, and it can give her a life. Without the correct treatment she won’t have one. Prednisone and pain meds just won’t cut it. Those are rescue drugs for when we have flares, not maintenance drugs for daily use. Prednisone can cause many more harmful things than Humira and the risks of having those harmful things happen are much higher: renal failure, diabetes, osteoporosis, infections, and more. The pain meds are also very scary. There is no medication that will be able to make her pain free without also inducing respiratory depression. Understand that we use both of these medications rarely. Most of us have a prednisone Rx hanging around for emergencies, but very few of us have narcotics. VERY few. Just about every one of us, with proper treatment, are able to get though the day with OTC pain relievers when needed.
Before I got the right treatment, I was trying to find out if wheelchairs came in pink, and wondering if I was ever going to be able to work again. She HAS to get proper care and really needs some better information. Send her our way. We would love to help her get on the right path.
I also wanted to add that Humira is one of the best drugs to TREAT psoriasis.
All of these comments are GREAT. I have had Lauren read all of them - although she is still not wanting to participate in the "discussions" yet. My hope - is that one day - with maturity and time....she will realize what a support system this place can be for her. I value your educated opinions and appreciate those of you "walking the walk" letting us caregivers know some good first hand perspective on this disease.
Part of Lauren's deal is just the age group she is in - and their ways of handling stuff (sorry - if that is offensive to some younger ones out there).....we also live in Bend - the most holistic place in the US......she was wanting to just do this whole thing "naturally", but all the experts are telling her that it just doesn't work for PsA. So, when "natural" wasn't cutting it - she went to those stand-by meds. She can no longer get any narcotics and has removed them from her life - seeing how destructive they have been. The prednisone is temporary (she is being tapered off it) because of the Brown's Syndrome. Both the orthopedic and rheumy are correlating her care. He has to dilate and look at her eye - and the consult with the rheumy about meds, etc. Like I said before, the Browns Syndrome (from PsA or RA) is extremely rare - but can cause permanent damage if left unchecked.
So, we head off to both of those doctors this week and she has had all the bloodwork done that Humira requires. She has a BIG trip planned to Maui with friends in Sept and wants to hold off taking the Humira until after her trip. I am sure the doctor (and myself) will try and get her to change her mind and begin it now.....so pray for that discussion - that her mind is open to good advice from those who only want what's best.
Thank you again!
Karen
If she wants to actually enjoy Maui, and not be in bed the whole time, she should really start Humira as soon as she gets it. I travels well, and the drug company can send her a nice travel pack for it. They’ll also give her all of the information she needs to fly with it and answer any questions she has. They are really great.
I responded really well to Humira and was feeling well in a few months.
I’m with GrumpyCat - get the Humira as quick as you can because she will most likely enjoy the trip much more! Apart from my work in Burkina Faso, I’ve been to Indonesia, Hong Kong, Singapore and Paris with either Humira or Enbrel. The airports are so used to it because of epipens and people with severe allergy.
Karen – there’s a new article about DMARDs vs Biologics in the Newbies’ Guide. You may find it interesting.
Karen, I was thinking of you and Lauren. How are things going?