So confused and painful

Haven't been on here in quite awhile due to various reasons, but thought I would put this out there. I was diagnosed with RA in early 2012, then was changed to PSA in early 2013. Last medications were Methotrexate and folic acid, plus Tylenol for pain (pharmacist told me it was the only thing I could take). We lived in the desert cities of CA until recently when we moved to Washington state to be with my husband's family. I was working for 8 months after being off for 3 years due to a Worker's Comp injury. Being back to work aggravated my psoriasis and pain so that I had pain where I never did before. The bottoms of my feet (mostly the heels), legs, right hip, tendonitis in my left wrist all the way across the outside of my left hand.

Once I settled my case and left work (a condition of the settlement), my psoriasis was gone, but the pain was not. I had a cortisone injection in my knee instead of having surgery for the meniscal tear and my knee and hands felt great for a few weeks. Now we have moved and are living with my in-laws. The last time I saw my rheumy he said the methotrexate was for the psoriasis and since it went away, I didn't renew the prescription and have been off for over a month. Don't see much difference, take ibuprofen to take the edge off the pain. Works sometimes. Hands are the worst, especially the left. Sometimes can't even stir anything it hurts so much. Right hip is killing me, but will have to wait to have it checked out. I know I should get sleep, but don't sleep very well either. And after a few months of no psoriasis - it has slowly reappeared on my elbows. And the spaces between my knuckles on the top of my hands are starting to swell again.

Worst part of all this is that we have no insurance and now will have to go on Medicaid. Which has no rheumatologists that I could find. Not quite sure if there is a question in this anywhere. Maybe I just needed to vent. Just feel so out of sorts since we moved and this pain is making me nuts. I keep going and trying to do what I can, but feel so useless when I can't do what I used to before this disease.

Thanks for listening...

You said that you can't find any rheumatologists that will take medicaid patients. So then your choices are working with a dermatologist, or with a GP. Either one can and should consult with a rheumy if need be, but either one can handle your day to day concerns. Methotrexate is a relatively inexpensive drug, and if you need a biologic, there are patient assistance programs that can cover most if not all, if you can prove your income.

My concern is the permanent damage that may be occurring due to lack of treatment. If you have psoriatic arthritis, the methotrexate does more than just treat the psoriasis, it also slows the progress of the disease and damage. Please seek out assistance.

NYazz, I’m so sorry you’re down in the dumps. When you’ve got this disease, it’s hard to cope with challenges because you feel so awful on top of feeling terrible. And depression and brain fog can be downright paralyzing. But please work up the energy to get yourself good medical help – or ask someone in your family to take over the search if you can’t muster the resources to do that. The stakes are high here.

As Stoney says, you can work through a dermatologist. If you can find a dermatologist who accepts Medicaid patients, they can treat you, or (even better) they can refer you to a rheumatology colleague who will take you. A family doc is better than nothing, but you may find them reluctant to prescribe a drug like methotrexate.

You must, as Stoney says, do your best to prevent joint damage from this disease. If you end up with damage, your lot in life will get even worse than it already is. Inflammation hurts, but damage hurts and is debilitating.

Maybe Santa could find it in his (or her?) heart to bring you a copy of the book I recommend in “Book Reviews” (above). If you learn as much as possible about this disease, you’ll be in a position to discuss your treatment options knowledgeably with the specialist when you finally get there. The Kindle version is a bargain, and if you don’t have a Kindle you can always download the free Kindle software and be reading the book on your PC just after Santa delivers. :wink: Knowledge will give you some power over this disease, which is what you need to prevent it from doing its worst on you.

Psoriatic arthritis is a vandal and a thief: it wrecks your body and it steals your life. Crime prevention is always the best strategy. Do what you can while you can.

And keep venting! That’s one of the things this place is for!

Seenie - I will definitely look into that book! I have a Nook so hopefully they have it in that format. I know I am probably not doing my body any favors by not seeing anyone right now, but things are a bit crazy right now. We just moved 4 weeks ago to another state to help my in-laws, and I just started looking into the doctor, insurance thing. I have contacted a doctor's office to see if they will take us, and have another in line to contact if they don't. These are GPs for now. I have noticed that I have more swelling in my hands, and my once beautiful nails are spitting all the time. I have to keep them very short now, otherwise the longer they get, the worse the ridges are and they split at the ridges. And you are so right - this disease does steal your life from you. I can't believe how things have changed in the year or two I have had it.

I guess I am just going through the motions right now trying to get settled and figure out what to do. It's hard to go from living in your own home to staying with someone else. Without jobs we can't get our own place yet, and honestly, I don't know who would hire me the list of physical restrictions I have. We shall see what happens when I start to look. My husband is going to look first. I have a claim in for Social Security, but that takes forever. Even with a lawyer!

Today was the first day I felt okay - it snowed and I was out in the snow running around like a kid! It was glorious!!! I even managed to get down on the ground and make a snow angel. It wasn't pretty getting up off the ground, but I didn't care. I loved it!

Thank you both for responding. I appreciate the help. :)

I would find a pain management doctor. Mine has helped me a lot. Put me on fentanyl patch and oxycodone as well as also finding my fibromyalgia and medicating that. I still have days I cannot get out of bed but the pain is bearable. I also see several other doctors. I was approved for ss but it did take time. I am curious why y your pharmacist would advise you on pain management.

NYazz, if there is a state university med school nearby they might take Medicaid. Having to deal with a move, a workplace injury, the workman's comp rigamarole, and PsA is a lot for anyone.

I don't know how it is for others, but I live in a town of about 75K, 120K in the county. We have one rheumy, and NO dermatologist who is currently taking both new patients and insurance. It's really hard to find care.

Hi, I'm concerned as well. I know as well as many here that lack of treatment will only cause more problems. The Mtx does more than help Psoriasis...for sure. You need to see someone asap. I have also had trouble...much trouble with my hands. It's the worst parts of my body. I have had many days, even months where I could barely groom myself and get dressed let alone hold a cup or feed myself without being in extreme pain, my hands barely worked. I associate all this with the fact that I went undiagnosed for several years and only started treatment just over a year ago.

Please speak to someone about what you need to do to help yourself. It will only get worse.

I have heard of dermatologists taking care of P and PsA. Worth a try. Also if someone puts you on Enbrel you can contact Pfizer direct for their subsidy program. the PsA needs to be treated on a continual basis starting from the diagnosis to stop joint damage from progressing. Good luck.

Are you on Medicaid now? There should be a number you can call to get a list of the rheumatologists (or whatever doctor you need) in your area that currently take Medicaid. You can also contact your local hospital and ask - university / teaching hospitals especially.

I hope you find a doctor, treatment that works for you, and some peace of mind soon! It sounds like you're dealing with a lot, all at once! Be gentle with yourself!

Just an update - I found a doctor, went on Medicaid and have an appointment to see a rheumy, but that is not until February 12th. I call every few days to see if anyone has cancelled, and I am also on the cancellation list. I take prescription Ibuprofen to ease the pain, but my left hand is so awful. In the morning it is all but useless, and finally warms up a few hours later. The skin is hypersensitive from about the elbow down to the nail bed, and only on the topside of my arm and hand. . Has anyone ever had this kind of sensation? It showed up about 3 weeks ago. Makes it difficult when you are left handed. Ugh!! I do feel fortunate that the psoriasis is limiting itself to my small parts of my scalp, and when I am really stressed, to my elbows.

Seenie - I did load the book onto my Nook and have looked over most of it. I probably will have to read it a few times before it sinks in. Seems my memory is not what it used to be.

I have a Social Security hearing tomorrow, so hopefully I will have good news soon. I moved out of state right before they had assigned the hearing, so it really messed with their heads, and since they refused to pay for my travel expenses (which their paperwork said they would if you live more than 75 miles away), I get to do it over the phone. Wish me luck!! This is my second hearing and I hope the judge can do the right thing... I was turned down for unemployment (after I had to quit my job for my Worker's Comp settlement), for medical reasons even though I told them I could work. I hope the Social Security thing goes through so I can have some income until I can find a job that will accommodate my physical restrictions. If I wasn't living this I could easily think it was all made up.

Have a good day everyone!!

NYazz, yes, the book is a lot to take in but I’m guessing that when you get to see the rheumatologist you’ll be glad you studied up!

The good news in your post is the fact that you have Medicaid and a rheumatologist. The rest, as hairy as it all sounds, will work itself out.

Wishing you good luck with the hearing!