Hi everyone, I really hate that there is a need for sites like this much less that I'm a part of them. Just doesn't seem fair that everyone here is in the kind of pain, and worse, that I am experiencing. But my grandmother used to tell me, "If you want fair then you're on the wrong planet". Anyway, I was dx'd about 4 years ago with psoriasis but have been dealing with it all of my life. I have been mis- diagnosed a number of times with weird types of dermatitis until I finally had a biopsy taken and it came back positive. My PCP was the first about 21/2 years ago to say psoriatic arthritis and referred me to a rheumatologist. He immediately started methotrexate injections.....a 12 week course....that lasted all of 5 weeks. I got to the point in 5 short weeks that I couldn't even walk. Everything hurt. Couldn't walk. Couldn't sleep. Could barely breathe without screaming. Not a fun time. Bounced back when I stopped the injections and had a little "honeymoon". Felt ABSOLUTELY FABULOUS for about a month. I felt like I was 25 and wanted to go jump out of airplanes again! Unfortunately that didn't last. The doc started talking about other treatments and gave me some literature and I RAN! This is what scared me.....THESE ARE POWERFUL DRUGS!!!! The potential side affects are deadly! The toxicity levels are unbelievable! All of what I read kind of struck me as "the cure being worse than the disease". So, since then I have been doing whatever works to keep the pain knocked back and the stiffness at a tolerable level, NSAIDs, hot showers, paraffin treatments for both hands and feet; etc. Things have taken a down turn in the past couple of months so I know that I need to explore other options. My PCP has suggested Cymbalta and possibly a biologic. What I have read does NOT fill my heart with glee over any of these drugs. However, I have never taken any of them either so I'm willing to explore the possibility of their use. But I would rather do something homeopathic if there is anything equivalent. ANY ideas? I am in the middle of a major melt down and I have NO idea where to go or what to do. Also, does anyone know of a GREAT, AWESOME, MIRACLE working rheumatologist in my area? Don't trust the one I went to before. He was way too quick to jump on the biologics wagon. And didn't want to listen to my concerns. Thanx for listening!
Well of course your scared. Sometimes Knowledge (the wrong kind) is dangerous. But even more scary is making a new normal in life.
If you hang around these boards and we hope you do. It will take a short amount of time to sear into your brain "fear the disease not the drugs" We all (well almost all) aspire to the biologics. they are the safest, most problem free, almost miraculous (when they work) of all available to us.
After prednisone, the most dangerous toxic life screwing up drugs of all are the NSAIDS. Hang around get comfortable and maybe we can get to the truth of the meds. There is a difference between disease and symptoms. But I'll warn you, most folks definition of a great awesome miracle working rheumy is one who treats the disease early and aggressively
Hi, Scottie Mom
Most of know that fear only too well. Been there. T-shirt’s in my closet. And none of us have had our hearts filled with glee about this disease or the treatments for it that are known to be successful. All of that said, we’re happy to listen to your concerns, and we might even have some advice to offer. And there are a lot of people here who lead very normal lives, with PsA which is under control.
Have you had a chance to read the book I recommend under “Book Reviews” (tab above)? Several of our members read it before going to their rheumatologist, and they found that being well-informed made for a better conversation. So when you find your prince or princess of a rheumatologist, you’ll get even better treatment if you know what you are talking about. (I’ll leave it to TNTLamb to drop a few names, as he seems to know almost every doc in the country!)
And finally, your Grandmother was right. “If you want fair, you’re on the wrong planet.” LOL! Love that expression, and I think I’m going to borrow it if you don’t mind.
It gets better. Really it does.
Seenie
PS If you’re wondering about homeopathy, there is a whole section of this site devoted to that and similar topics, under the “Discussion” tab.
I was right there with you with being horrified about what I was reading about the treatments for PsA. I spoke with not only my rheumatologist, but my more naturally minded family practitioner, and a naturopathic physician. It was the naturopath who was actually most adamant about me taking the drugs that would halt the disease, as well as doing whatever I could to improve my overall health. I started with Enbrel and now go for Remicade infusions. Biologics, for me, have been life-changing in the best way - they are the difference between me being in a wheelchair or going on hikes with my family. Different people have different experiences with them, but for me, so far, the quality of life is definitely worth the minimal risks of the medication.
I would agree with TNT for the most part, but would like to add Cyclosporine to the list. However, Cyclosporine is not really a PsA drug.
I too like you was panic stricken. At the time a wonderful gentleman on this site chatted with me. He was a statistician. He went through all of the horrific side effects. But then went through what the placebo group results were as well. All in all, the benefits of the biologics outweigh the difference in the two groups. I can say from personal experience I was bedridden unable to breathe at 46 years old (my PSA also hits my lungs). Two years later & I am now working at a very demanding job, getting ready to take our son off to away college in January, attending social events with friends, and LIVING MY LIFE.
Yes there is no cure. Yes flares stink. Yes having labs done and being tested for possible other things on a routine basis gets tiring. But stopping the progression is key. There are no words for going through a day and realizing at the very end that IT WAS A GOOD DAY. Nym is 100% spot on by using the term life changing.
You WILL see posts and blogs about pain, bad days, thousands of questions about meds, family concerns, but keep reading. There is soooo much more. There is support. There is a host of people who understand. There is friendship. There is useful information. All from people who are where you are or have been where you’ve been. There are many times I am not active, but “stalk” posts for information or inspiration. So, welcome to our club!!!
Thanks for the uplift. Knowledge is why I'm here. If you knew anything about me prior to this stuff kicking me to the curb, you would understand my apprehension. Six years ago I was active, healthy, involved...living life on my terms. Then my thyroid stopped working. Tail spin. Then the psoriasis. Tail spin. Then the arthritis. Crash and burn. This is not me. I have no idea what my "new normal" is but it has GOT to be better than this. So, I have started my quest. I may be looking for a rheumatologist who is a miracle worker...early and aggressive treatment(that's fine)....but I really NEED someone who LISTENS and answer my questions. I am and always have been an advocate for myself. Most doctors don't like that, they prefer to dictate. I don't respond well to that. I have always needed to know why. So I question and seek. It's going to take me a bit of time to get through this site. There is TONS of info here and I don't want to dismiss any of it. Thanks again.
Stress, depression, and anxiety make this disease worse. Do whatever you can to get past the drug anxiety. Doesn’t matter what wonder drug you take, your disease isn’t going to get better if you give plenty fuel. What I said is a difficult task and takes a lot of support especially if you are custom to taking drugs frequently. I know I still struggle with it.
I have been dealing with psoriasis all my life, and possibly PsA from around the time of High School. However, most people don’t have these issues all their lives; one day the switch is turned on and bam! Where there is one autoimmune disease there is probably another.
Also, it’s important to note that most of drugs for PsA will initially make the disease worse before it gets better. Be patience with the drugs.
Hey 
I know where you are coming from! I had almost the same experience. When I was diagnosed I was in so much pain my husband had to help me roll over in bed and get in and out of the car. I couldn’t even stand up from the sofa. It was awful!! I really thought my life was over. And the fatigue was almost worse than the pain- I slept so much! I was so depressed. I’m so young and I couldn’t do any of the things I love to do. My parents would say stuff like, “You need to exercise more.” Or “You just spend all your time in that house …” Aghhhhh!!! They totally didn’t get it and didn’t take the time to read about the disease. I first took plaquinil and didn’t get great results but the prednisone - wowza!! I was kickin’ butt and takin’ names Too bad it’s so bad for you!! Then I took methotrexate injections- blach - and Enbrel. That worked great for awhile. I have an amazzzzzing rheumatologist who has dedicated his life to researching and educating people about PsA. He really explained to me all about Enbrel and mtx and Humira and their side effects. He told me that they keep close tabs on my bloodwork to monitor my liver function. They check it every few weeks. And he also told me that the side effects are so so so rare- basically it is just that they have to tell you every possible scenario. I can tell you one thing without a shadow of a doubt, my life now, with Humira, is 1,000,000 times happier than it was without. I can walk around the zoo pain free! I walked FAST up the stadium stairs at Clemson this week!! I can roll over in bed. I can crochet and needlepoint. I still have flares, but the longer I am on it, the better it works. I feel more and more like my old self every day. My family is so happy to have their mom back. I have two teenage daughters. I couldn’t even shop with them before. I can’t wait for Black Friday
So talk to your doctor and don’t let the uninformed posters scare you into not taking your life back. It is a decision you have to make for yourself. But at least make it based on facts and not on fear. Hugs!!!
Also, if your dr doesn’t listen, get a new one! I didn’t let my GP just refer me to someone. I asked a round and found the name of a rheumatologist who was beloved by his patients. Then I asked for a referral to that dr. I do drive two hours to see him, but it is SO worth it!!!
Give yourself time to come to terms with your diagnosis and your treatment options. It might be worse to feel like you're rushing into treatment. One of the most difficult things to deal with when you have PsA is the unpredictability of the disease. The "new normal" for many of us is seeing what each new day brings - the bad and the good.
I can relate to going from full steam ahead to full stop. I'm a homeschooling mom of five kids, two with Aspergers, and we were always out and about doing things. We hiked, went to museums and science centers, were involved in tons of activities and organizations and then I had a MAJOR flare that knocked me down fast. Diagnoses of hypothyroidism, celiac, psoriatic arthritis, and autoimmune hepatitis followed one after the other. First I was using a cane, then crutches, then a wheelchair. It took me forever to sort out health issues and get approved for a biologic, so by the time I started Enbrel, I was over the fear and looking forward to stopping the progression of the disease. At the advice of a friend, I read the warnings ONCE, then didn't look at them again. I needed to choose quality of life. Period.
Definitely find a rheumatologist who takes time with you and who listens. My first rheumy appointment was about an hour and a half long, and most of my every-few-months appointments are at least a half hour, most of it talking about how I'm doing, my concerns, etc.
Wow TigerGirl, your post was so encouraging, as I am about to start Humira! I used to go hiking and walking for miles, now I can barely get around the block. It has been debilitating, and at my age (28) people don't tend to understand..."just exercise more and lose some weight and you'll be fine." I wish! Most recently my MIL said "well it can't be that bad since you don't LOOK sick..." I now have psoriasis lesions all over my body except for my face and chest, so most people don't realize how bad it is. All I want now is to get my life back and find my "new normal." I don't need to go back to hiking for miles, but it would be nice to take a long, leisurely stroll with my hubby without pain and muscle spasms. So fingers crossed for Humira!
TigerGirl said:
Hey :-)
I know where you are coming from! I had almost the same experience. When I was diagnosed I was in so much pain my husband had to help me roll over in bed and get in and out of the car. I couldn't even stand up from the sofa. It was awful!! I really thought my life was over. And the fatigue was almost worse than the pain- I slept so much! I was so depressed. I'm so young and I couldn't do any of the things I love to do. My parents would say stuff like, "You need to exercise more." Or "You just spend all your time in that house ..." Aghhhhh!!! They totally didn't get it and didn't take the time to read about the disease. I first took plaquinil and didn't get great results but the prednisone - wowza!! I was kickin' butt and takin' names :-) Too bad it's so bad for you!! Then I took methotrexate injections- blach - and Enbrel. That worked great for awhile. I have an amazzzzzing rheumatologist who has dedicated his life to researching and educating people about PsA. He really explained to me all about Enbrel and mtx and Humira and their side effects. He told me that they keep close tabs on my bloodwork to monitor my liver function. They check it every few weeks. And he also told me that the side effects are so so so rare- basically it is just that they have to tell you every possible scenario. I can tell you one thing without a shadow of a doubt, my life now, with Humira, is 1,000,000 times happier than it was without. I can walk around the zoo pain free! I walked FAST up the stadium stairs at Clemson this week!! I can roll over in bed. I can crochet and needlepoint. I still have flares, but the longer I am on it, the better it works. I feel more and more like my old self every day. My family is so happy to have their mom back. I have two teenage daughters. I couldn't even shop with them before. I can't wait for Black Friday
:-) So talk to your doctor and don't let the uninformed posters scare you into not taking your life back. It is a decision you have to make for yourself. But at least make it based on facts and not on fear. Hugs!!!
I take a very low dose nsaid and I feel fine. But I also follow an incredibly strict diet and train like a dog at the gym. Or of course I could just have a mild presentation of the disease. My Mom had it and got rid of it, so maybe that's the case. One thing is certain, we are all different and react in different ways to the medications that are available.
You're over reacting. If anything it sounds like the mistakes made with your treatment were within your control to change but you didn't. I'm no doctor but I'll tell you the same thing I've said time and time again. Listen to your body and don't be afraid to speak up.
Biologics are not to be taken lightly but there's no need to freak out over them either. As with any medication you take for psoriasis and psoriatic arthritis there is a lot of trial and error. So what it comes down to is as simple as this ... First and foremost, if you don't trust your doctor FIND A NEW DOCTOR. After that, if your condition is so bad that you have to do something different because nothing else has worked and your doctor recommends a biologic you shouldn't be afraid to try it. It's not as if you're going to try it and drop dead but by that same token if it doesn't seem to work or you feel as though you're getting worse STOP! There is no way in hell that I'd go for weeks only getting worse and worse before I stopped. I've been on enough medications for this to know one thing for sure and that is when starting a new treatment I may not see improvement the first couple weeks or so. I may level off a bit but I've never got worse on a new treatment before I got better and I certainly never got worse and kept taking it. And if I felt I was getting worse or having a bad reaction to the meds I was on the phone immediately to my doctor to address it.
Remember, the longer you go without treating the disease the more damage it does in the long run.
Good Luck,
k
Wow, you're right where I was 6 months ago.. SCARED! The rheumy I was referred to took one look at my fingernails and said, "Oh you're an easy one; this is psoriatic arthritis. We'll put you on Humira" and out the door I was sent! As "almost" pleased as I was to finally have a name for my misery, I was horrified at the thought of having to take these horrific poisons in order to feel better. I spent the summer on lite antitbiotics and a strict anti-inflammatory diet instead but I only got worse. I also spent that time contemplating my future and how I was going to live it out from here. Many many days and nights of incredible fear, tears, and depression (kept from everyone, of course so as not alarm anyone). Then I caved in to the Humira injections. Ironically,Humira was that drug commercial on TV that my husband and I laughed hysterically about when they rattled off the side effects! We would add even more twisted and disgusting side effects just for fun.... and now I'm on it! 6 weeks after the first injection I felt like a new person. Right now life is good. Nights are still uncomfortable with back pain and spasms, but in general I'm doing well. I try not to think of how long this will last, but I have spent many months working on a plan "in the event" that in the near or far future I cannot work or even possibly be unable to take care of myself. It's along mental process of "acceptance", or perhaps "acceptance for now until I can find a permanent cure", but still to be at ease mentally, is a must. Hang in there and keep reading info from this site...It REALLY is helpful and makes you realize your are NOT alone...
Melody, you are so so so fortunate to have been diagnosed by a rheumatologist who believes in early and aggressive treatment. Had I been that lucky, I’d be in much better physical shape now than I am. Counting that as a blessing will make getting to acceptance just a bit easier.
Try not to get to overwhelmed by all the medical terms and language.I agree that it is very terrifying when you read all of the terrible things that CAN happen.
If you immerse yourself in too much and don't give yourself a break to think about other things that are good in your life you may feel that horrible depression that all of us feel at some point. Hope you find what you need here on this site... there are many different discussion groups and interesting topics. Good luck
I just want to thank everyone who has responded. I kind of feel like I'm going through what everyone else is/has been going through and ironically I feel better for that very reason. It's awful that I feel better because someone else has suffered what I am going through. Sorry. I have done a lot more research and my heart STILL isn't filled with glee over what I've learned, but it is what it is and it's time to deal with it. I have an awesome PCP and we are on the road to finding an awesome rheumatologist and devising a plan of treatment. I'm not sure where this journey will take me but like everyone else here, it's one that I must take. I'll be honest and tell you that most of the treatment options still scare the poop out of me (kind of like chemo, gotta poison the whole body to kill the cancer, and yes the cancer is gone but what are you left with?), and the fact that this is only a treatment vs cure, but again, it is what it is and if I can get even part of my life back, it'll be worth it. I'll keep you updated and thanks again for listening.
It’s not awful! It’s normal, that’s why we’re here. And it’s really good to hear that you’re starting to get your head around this thing. Even better, you are taking action.
No need for thanks, scottie mom, but now that you’ve said it, you’re so welcome. Please don’t disappear on us: you too have lots to offer others.
scottie mom said:
It’s awful that I feel better because someone else has suffered what I am going through. Sorry.
I completely understand your fears. I think along with dealing with my diagnosis...the meds scared me the most. Between worrying about being deformed and worrying about the meds, I was going a little crazy and my stress level was through the roof.
We all just want to live a fairly normal life again. We all are having or have had our struggles with finding a medication that works. I too have a fear of the Biologics and am afraid if my meds now don't work that will be the next step. I prefer not to take that road but may have no choice. A good Rheumy is important.
Sorry I haven't been able to check where you are but do you have a GP that can give you a referral to a Rheumy ?
Hang in there...it will get better.