Not been on in a long as have no positives to add or say, I have spent the most part of the last four years in a hospital bed, trying meds, physio, trying to push and go to work, and then bamn I flare bad, end up needing joints done, meds upped or changed even due to side effects plus miss even more work.
And still through all this I am still in my 20's :( I have to date lost so many friends etc as I've had no choice cancel plans due to one thing or another, they don't believe it or quiet simply just don't want to "know" me any longer :( Despite the fact only a handful know.
So anyways I started Remicade which my Rheumy is hopeful of being my "miracle" To date have two rounds of it with nothing to report except more swelling joints nausea headache and extreme tiredness, does this ever let up?
Only on it a short while bloods rising but also take predisolone DMARD and many other daily meds and still???? ........
So fed up of this arthritis, any and all advice views etc appreciated ! As at the minute life feels as though it is passing by and I'm stuck :( Going to stop now as tears are flowing :(
I think that the best thing is to talk about it. Vent Vent Vent. Everyone that belongs to this group can relate in some fashion to something that you are going through and we are here to support you. I have also been to private counseling several times and am due to go again (I'm having mult flares). Check with your work and see if they have an EAP (employee assistance program) that covers counseling services. If you possibly can-hang onto that job. Personally-if I didn't have to go to work-I would have spent the majority of the last few years in my jammies. Work gets my mind off of my problems-for a few minutes at a time anyway. Best wishes to you and I hope that the remicaide will give you some relief.
I second the advise to talk about it. This is a safe place to vent. You are among folks that are dealing with very similar experiences. Some have much experience and often offer good advice and much support.
I go to counseling which also helps. I am not sure what resources are available to you in Ireland. Perhaps you can ask for a referral from you doctor.
You are at a difficult point. It takes time for the biologics to work. The good news is that you have started a biologic. I can attest to the fact that there is light at the end of the tunnel. For me it took finding the right biologic. The symptoms diminished a good deal. I also have learned some strategies from physical therapy that help me to better manage things.
There are a number of people here that are still working. They too have had their challenges. You may want to explore what your options are as far as medical leave and any possible accommodations or assistance, such as the previously mentioned EAP, that your employer may provide. I know that finding out the realities of my various options helped me to have some peace of mind.
You have a lot of treatment options still available to include the remicade you have just started. As frustrating as it can be, you need to give that process some time.
I understand the social frustrations, I have had my social circles significantly narrow when I fell ill. It is isolating and a good reason to seek counseling. But it is by no means permanent state of affairs. Effective treatment can tame a lot of the chaos. Hang in there. I hope the remicade brings you some relief soon.
One of my best friends is from Ireland. She has been a great support to me as I've just recently been diagnosed with PsA and she is wanting to find out everything about the disease and the meds and the best options, etc. Since you're from Ireland, I already like you:) Seems like they grow good people in Ireland.
I wish I had good advice for you, but I'm a newbie. I can certainly attest to the fact that there are lots of other people with good advice on this site, however. I do have some experience in the area of counseling (a Master's degree) and would definitely encourage you to seek some professional counseling -- maybe just for the short-term. It can be very empowering, giving you "tools" that you can use to fight any feelings of darkness or depression -- and you CAN fight those. Believe me. You are far more capable than you might realize at this moment.
Just don't ever believe the lie that you're alone -- because it is, in fact, a LIE. And your life is YOUR life, so it's not passing you by. You're still very much alive and very much living it, and you'll continue to do so.
I hope I'm not going overboard here:) I just don't want you to lose hope. Don't deny your feelings of pain and frustration and anger and loneliness. But don't let them define you, either.
Amen to what Carolynn said. Don't let this condition define you!
Think Niel. Who are you?
I am a daughter, a mother, a wife, a friend, an artist, a writer, a professional, a teacher, a speaker, a director, a believer ...I am much more than a patient with PsA.
Carolynn, I am so glad you posted and shared your feelings and frustrations. It is so frustrating to be stuck on a body that seems like it is waging war on your mind and soul. I don't have any advice, but please know that you are not alone in your feelings. I hope you find something, today, that will bring hope and a smile to your heart. I will say a prayer <3
Hello! I have been dealing with a myriad of symptoms for the past 8 years. I have has several doctors give me a pat on the head and a psych referral. I am honestly over all of this. I finally was diagnosed Jul of 2013 but PsA only explains some of the symptoms and I believe that I have some secondary stuff going on (e.g. nerve pain). I am grateful that I found a rheumy that knew what was going on with me but he has stopped listening to me and I feel like I can’t participate in my own health decisions. I’ve been on Sulfasalizine and doxycycline for over a year now. After the 5th month, I told my rheumy that I was still having much of the same pain and was experiencing new symptoms. He showed me my lab results and said I was showing improvement and gave me a speech about when we address the big pains, all of the little pains start to float to the surface. I asked twice why I am on doxycycline. He got annoyed with me when I asked if I could stop it (the stuff costs $220 before my deductible has been met, which would be fine if I felt it actually did anything). He never did answer my question but went on about how great of a rheumy he is and all of the research he’s been involved with-even pulling a book off the shelf to show me his name in print. I don’t feel that sulfasalizine or doxy has helped at all. The tiny bit of relief that I have had comes from my antidepressants. Needless to say, I am looking for a new rheumy. I’ve been in “my gap” for over a year now. I can’t help but wonder if these meds are causing harm as they are certainly not showing any improvement in my symptoms. I am so glad I found this site and just reading about people with similar experiences has helped more than I can say. Wish me luck.
I don't know how long you have been on the SSZ and Doxy combo but I assume you were put on it By Dr. Jay Warrick or one of his associates that have done some interesting work at the University of Wisconsin. That seems to be his thing. I'm certain the other groups in the area have been influenced by his rather strong personality.
Obviously if it has had an effect on your markers it is working to some degree all though it would take a min of 3 mos and more likely 6 to have an effect. (as do most med regimes) It is unusual with PsA to have increase inflammatory markers which is why he likely started you on the combo you are on.
The Doxy is a low grade DMARD medication with many fewer side effects than MTX or others by combining it with the SSZ, he is accomplishing a number of things. He is eliminating reactive arthritis such as those caused by lyme, shigella, chlamydia etc. he is also eliminating some of the Enteric arthritis types (those that start in the "gut."
By doing a dual DMARD combo he has eliminated nearly 6 months off the gap and fulfilled nearly every requirement for you to qualify for the more aggressive treatments (which will make your Doxy copay seem like chump change)
I have some concern about the Doxy in that for many of us it makes things worse if we have a TNF inspired arthritis. There is a HUGE body of evidence showing the alll of the Tetracyclines and relatives increase the bodies production of TNFa (especially IL-6) This of course is a huge problem for many of the alternative treatment centers (one in particular used to dominate) for arthritis who have all but disappeared. The biggest the Road Back Foundation has become a drug rehab program because they have found their treatment actually mad many patients worse. (besides turning them blue)
Gbates77 said:
Hello! I have been dealing with a myriad of symptoms for the past 8 years. I have has several doctors give me a pat on the head and a psych referral. I am honestly over all of this. I finally was diagnosed Jul of 2013 but PsA only explains some of the symptoms and I believe that I have some secondary stuff going on (e.g. nerve pain). I am grateful that I found a rheumy that knew what was going on with me but he has stopped listening to me and I feel like I can't participate in my own health decisions. I've been on Sulfasalizine and doxycycline for over a year now. After the 5th month, I told my rheumy that I was still having much of the same pain and was experiencing new symptoms. He showed me my lab results and said I was showing improvement and gave me a speech about when we address the big pains, all of the little pains start to float to the surface. I asked twice why I am on doxycycline. He got annoyed with me when I asked if I could stop it (the stuff costs $220 before my deductible has been met, which would be fine if I felt it actually did anything). He never did answer my question but went on about how great of a rheumy he is and all of the research he's been involved with-even pulling a book off the shelf to show me his name in print. I don't feel that sulfasalizine or doxy has helped at all. The tiny bit of relief that I have had comes from my antidepressants. Needless to say, I am looking for a new rheumy. I've been in "my gap" for over a year now. I can't help but wonder if these meds are causing harm as they are certainly not showing any improvement in my symptoms. I am so glad I found this site and just reading about people with similar experiences has helped more than I can say. :) Wish me luck.
I don't know how long you have been on the SSZ and Doxy combo but I assume you were put on it By Dr. Jay Warrick or one of his associates that have done some interesting work at the University of Wisconsin. That seems to be his thing. I'm certain the other groups in the area have been influenced by his rather strong personality.
Obviously if it has had an effect on your markers it is working to some degree all though it would take a min of 3 mos and more likely 6 to have an effect. (as do most med regimes) It is unusual with PsA to have increase inflammatory markers which is why he likely started you on the combo you are on.
The Doxy is a low grade DMARD medication with many fewer side effects than MTX or others by combining it with the SSZ, he is accomplishing a number of things. He is eliminating reactive arthritis such as those caused by lyme, shigella, chlamydia etc. he is also eliminating some of the Enteric arthritis types (those that start in the "gut."
By doing a dual DMARD combo he has eliminated nearly 6 months off the gap and fulfilled nearly every requirement for you to qualify for the more aggressive treatments (which will make your Doxy copay seem like chump change)
I have some concern about the Doxy in that for many of us it makes things worse if we have a TNF inspired arthritis. There is a HUGE body of evidence showing the alll of the Tetracyclines and relatives increase the bodies production of TNFa (especially IL-6) This of course is a huge problem for many of the alternative treatment centers (one in particular used to dominate) for arthritis who have all but disappeared. The biggest the Road Back Foundation has become a drug rehab program because they have found their treatment actually mad many patients worse. (besides turning them blue)
Gbates77 said:
Hello! I have been dealing with a myriad of symptoms for the past 8 years. I have has several doctors give me a pat on the head and a psych referral. I am honestly over all of this. I finally was diagnosed Jul of 2013 but PsA only explains some of the symptoms and I believe that I have some secondary stuff going on (e.g. nerve pain). I am grateful that I found a rheumy that knew what was going on with me but he has stopped listening to me and I feel like I can't participate in my own health decisions. I've been on Sulfasalizine and doxycycline for over a year now. After the 5th month, I told my rheumy that I was still having much of the same pain and was experiencing new symptoms. He showed me my lab results and said I was showing improvement and gave me a speech about when we address the big pains, all of the little pains start to float to the surface. I asked twice why I am on doxycycline. He got annoyed with me when I asked if I could stop it (the stuff costs $220 before my deductible has been met, which would be fine if I felt it actually did anything). He never did answer my question but went on about how great of a rheumy he is and all of the research he's been involved with-even pulling a book off the shelf to show me his name in print. I don't feel that sulfasalizine or doxy has helped at all. The tiny bit of relief that I have had comes from my antidepressants. Needless to say, I am looking for a new rheumy. I've been in "my gap" for over a year now. I can't help but wonder if these meds are causing harm as they are certainly not showing any improvement in my symptoms. I am so glad I found this site and just reading about people with similar experiences has helped more than I can say. :) Wish me luck.
Thanks for the reply. My Dr. is not the doctor you mentioned above. His name is Thomas Namey in Knoxville. It would have been nice to have understood all of the info you gave on doxy but he never went into detail in the year and a half that I’ve been his patient. When I asked about why I was on doxy, he became defensive and seemed annoyed with me. I wish you knew my personality because you would agree that kind of reaction by him was ridiculously unwarranted. I always show respect and my tone was nothing but inquisitive. I really want to understand what’s going on with me. I see an excellent nurse practitioner who told me that many doctors question his protocols. My primary doc advised getting off the doxy. But I also know that neither one of these medical professionals are specialists.
I have not found the info yet that you have on the potential effects of Doxycycline on PsA nor did I know that it was a low-grade DMARD. The only thing I objected to upfront was the use of Methotrexate. I watched a family member die slowly and painfully from it, as she was on high levels prescribed by her doctor. So needless to say, I am frightened of it!
When you remarked, “he has shaved off 6 mo. off my gap”, I understood because I looked into Aetna’s policies and it clearly states that they want to see that I’ve tried at least 2 DMARDs before going to the Biologics.
I am at a crossroads, (one of many I suspect). I don’t feel comfortable with Dr. Namey anymore and I have to wait until March to see another rheumy. I am nervous about potentially starting the next group of drugs. I know the mantra here is “don’t fear the meds” but I do. I’m thinking that perhaps I will take these next few months to focus on losing weight and eating right (laying off sugar which I know is terrible for inflammation) and see where I am in March. I just worry that in the meantime, my joints are going to experience more damage.
Doxys effect on PsA would be IF you PsA is enteric or reactive (septic) arthritis in origin. If you haven't responded by now you won't. Its not used beyond that except for very early treatment of RA
The only time Methotrexate is given in high doses is when it is used as chemotherapy drug or for ectopic pregnancy. I don't mean to sound insensitive, but I doubt your friend died from MTX.
Yes Dr. Namey does seen to be a legend in his own mind, his interest in "gut health" is concerning combined with a Doxy regime I have a few alarms going off. Have a long visit with a good pharmacist they may be able to sort it out. Anything you read about ANY medication in the first 2 - 3 pages of a google search is probably wrong.
I am not sure of the origin of my PsA but I will say that I have a long history of stomach issues so I’m sure he took that into account. He probably suspects that it is enteric, I just wish that he had explained the method to his madness. It would have made all the difference. I had read that in the early days of studying arthritis, doctors thought that perhaps it was caused by bacteria but that is not the prevailing thought today. I am very aware of where my information comes from. I do read the comments of others and do google searches but know that those aren’t reliable. So, I spend hours searching for research articles in peer-reviewed journals, studies…I want to be a participant in my health decisions and not blindly trust the first rheumatologist that comes along.
My friend was my mother-in-law and the official cause of death on her death certificate was methotrexate poisoning. She had sarcoidosis. Again, she was on high doses. Her esophagus had to be banded, her liver was affected beyond repair, several blood transfusions, damaged her kidneys…it was awful. It was home hospice towards the end. Dr. Namey told me that if he put me on MTX, he would inject it which he said would not cause the kind of damage she sustained and it would be far less of a dose. I just can’t go there.
Thanks for taking the time to chat with me. I still have so much to learn and it can be overwhelming.
Thats very sad Gina. Its been a long time since I have heard of MTX being used that way and then only because of adrenal damage do to steroids. I am so sorry for you.
In any event by using the SSZ and the Doxy, you may well be able to skip the whole MTX thing and get right to the Biologics. I would certainly let Dr.Namey know you are not a happy camper and want more explanation..........
Hi Gina, that is sad and scary what your mother-in-law had to go through. May she rest in peace. I can understand why you don't want to take mtx. Idk much at all about it other than it's one of those drugs it seems like people either love it or hate it--my mom was put on it for polymyalgia and she hated it so discontinued it after a couple months. That's where I get my negative attitude towards it. Sybil has said many times on here that mtx has helped her. Sybil, I'm hoping now that you're on Humira you'll be fine without the mtx. Cross your fingers because it would be less meds against your immune system and affecting your liver.
Good luck, Gina!
Interestingly enough, sarcoidosis is not a cancer. It’s thought to be part of the autoimmune family…and what a family it is. I’m stuck in that place between wanting relief and treading carefully with medications.
True enough, its not cancer but because of the granulomas it can behaves very much like cancer. It accelerates the effect of everything that comes into or out of the body. While quick research passes it off as a lung disease that can be treated much like asthma. Its a real big deal. Its one of those diseases that when it goes wild goes really badly. I put it up there in the same column as ALS.Way back I dealt it directly in one of those cases that went bad.
That being said Gina, if it wasn't MTX it would have been something else for your Mother in law. Nothing can take the horror she faced (or her family faced) away. But meet your disease where it is. There is no way someone should ever have toxidosis from any med unless something very unusual occurs to accelerate its effect.
I met an 11-year old girl with arthritis who was bouncing around the room with a smile when I met her. Previously, she had been in a wheelchair and weighed about 25lbs heavier due to steroids. It took a long while, but her docs finally found a med that helped her tremendously.
I, myself, was suffering with extreme fatigue - my worse PsA symptom. Barely able to get through a work day and do anything social. Then someone here sent me an article how to discuss fatigue with your doctor. Now, I'm taking narcolepsy medicine and I feel like a normal person again. (Although, I do have episodes of hypersomnia.) It took over 18 months to resolve that symptom. I'm also on my 3rd biologic that is a winner for me.
Wish me luck.