Looking for answers

I have psoriasis on one side of my scalp, and have had since I was about 16. Then it appeared in my nail beds on my fingers and toes. After seeing many dermatologists, I was given the tar based products with no results. Due to my vanity, I went to a nurse practitioner who saw the curves of my fingers and said this was above and beyond just superficial issues. I thought I knew best, and declined the bloodwork she had suggested. I am now 35, and started feeling a burning pain in my spine earlier in the year, and then pain in my hands and one foot. After looking at sites for psoriasis, I observed some guidelines for PsA. I made an appointment with a specialist. Sure enough, after labs, x-rays, and sonigrams, I became part of this club. I was put on Methetrexate, Meloxicam, and folic acid. I had side effects and requested a new course of treatment. Enbrel was to be the answer until my insurance denied it, and it was $2500. I am currently taking meloxicam and nothing else. I hurt all day. My doctor refused any topical creams or less harmful medications due to his belief in Enbril. I fired him. I soak in a hot bath, over-use ibeprophen, and sleep for comfort. I want to be pain free. I started an diet to prevent inflammation and hope for some relief. Any tips or suggestions on where to start are most welcome. Thank you.

There are three kinds of meds for PsA NSAIDS (which you are taking) DMRDS (which you quit taking) and biologics. Sounds like your beef isn't with your doc but rather your insurance company. Don't know where you are at, but having failed the DMRDS generally they can't refuse the biologics. The next step would have been for your doctor to appeal to the insurance company. Failing that a phone call to the state insurance comissioner (if you are in the states.)

I am unwaware of less harmful drugs that are neither Biologics or DMRDS. Nsaids are the most harmful of the three which you are taking. Not do I know of creams that are not NSAIDS. So I am not sure what you are looking for. I will say that unless you make peace with your old doc, it will be MONTHS until you get anywhere.

While you may not have to repeat the tests you will have to have new ones. then you need to hope the new doc will agree with the PsA Dx. Once he does, you will ave to try several months of NSAIDS (there are lots of them, so it may be more than just a few months) Once that is past you will have to try DMRDS. Now your idea of side effects and an Insurance companies idea may be two different things. Keep in mind MOST drugs for chronic illness have some side effects most go away, some are a nuisance. After you fail the DMRDS, then you can start the biologics again. Each one will be 3 - 6 month trial.

Nobody should deal with a doc they don't want, but there ARE implications in changing.

Sorry to hear about your pain and stress... For clarification.. when you said you "became a part of this club" did you mean a doctor (Rheumatologist?) confirmed you have psoriatic arthritis? If so, do you have any pitting of the nails or swollen joints? The reason why I'm asking this is because there seems to be a variety of "flavors" of diseases around PSA that are related but have been treated slightly differently like AS or even RA. Also, some other questions that are helpful to know.. are you HLAB27 positive? any other biological markers tested? arthritis related conditions especially when you were "a kid"? mysterous dandruff or bowel disease? I know your frustration.Glad to see you here asking questions... Besides Methotrexate, there are other dmards

I am sorry my response was a bit vague wasn't it? Yes, I was diagnosed by a rheumatologist. I have pitting in my nail beds, my nails pull away from the beds, the thickness is shocking, and oh how I swell...Right now it is the trigger finger on my left hand that is the hardest to handle. My face and body also swell in the morning after sleeping. I had the bloodwork done and have no clue on how to read the results. The dr said the "labs were alright." How that measures up against others who suffer with this, I do not know. I have little support from family and friends because they can't see what is going on with my body. I get up, go to work, and endure. If the pain and swelling gets under control, I think I can continue to function.

BigFoot said:

Sorry to hear about your pain and stress... For clarification.. when you said you "became a part of this club" did you mean a doctor (Rheumatologist?) confirmed you have psoriatic arthritis? If so, do you have any pitting of the nails or swollen joints? The reason why I'm asking this is because there seems to be a variety of "flavors" of diseases around PSA that are related but have been treated slightly differently like AS or even RA. Also, some other questions that are helpful to know.. are you HLAB27 positive? any other biological markers tested? arthritis related conditions especially when you were "a kid"? mysterous dandruff or bowel disease? I know your frustration.Glad to see you here asking questions... Besides Methotrexate, there are other dmards

One of the difficulties with PsA is that most often labs are okay. Some of the older Docs look for specific markers.

No problem Old Gal... you know its interesting I've always had this strange thing with my eyes and gums.. My gums actually swell and I need reading glasses when it gets worse. When I am under control, I can read without glasses and gums feel better. I had to buy heavy duty nail clippers (look like plyers) to cut my toe nails.

Swelling of the face is horrible. I don't have that but I have a butterfly like rash on my face anymore since I've been on longterm Pred. It started in hghschool and and I always thought it was sunburn. (Incidentally it is associated with Lupus- another autoimmune but I don't have that). My wife is very supportive but it has really challenged our relationship and many times I feel helpless... and my kids suffer (2 young ones). Again, I feel alot of guilt for not always being there. Ask your dr about hlab27 and the other markers, they don't necessarily tell you that you have a particular disease BUT they give some clues to help figure out what might be going on...could lead to trying a different med or understand what long term consequences there may be.. like I had trouble brathing at rest and my GP ran a cardiogram. He couldn't figure out what was going on but a chest xray confirmed some inflammation in my left lung... no infection but here it turns out that it IS realted to my PSA. I found this by searching for articles related to the marker I tested positive for...Not everyone will have lung involvement (I guess I'm lucky ;-) )
Old Gal said:

I am sorry my response was a bit vague wasn't it? Yes, I was diagnosed by a rheumatologist. I have pitting in my nail beds, my nails pull away from the beds, the thickness is shocking, and oh how I swell...Right now it is the trigger finger on my left hand that is the hardest to handle. My face and body also swell in the morning after sleeping. I had the bloodwork done and have no clue on how to read the results. The dr said the "labs were alright." How that measures up against others who suffer with this, I do not know. I have little support from family and friends because they can't see what is going on with my body. I get up, go to work, and endure. If the pain and swelling gets under control, I think I can continue to function.

BigFoot said:

Sorry to hear about your pain and stress... For clarification.. when you said you "became a part of this club" did you mean a doctor (Rheumatologist?) confirmed you have psoriatic arthritis? If so, do you have any pitting of the nails or swollen joints? The reason why I'm asking this is because there seems to be a variety of "flavors" of diseases around PSA that are related but have been treated slightly differently like AS or even RA. Also, some other questions that are helpful to know.. are you HLAB27 positive? any other biological markers tested? arthritis related conditions especially when you were "a kid"? mysterous dandruff or bowel disease? I know your frustration.Glad to see you here asking questions... Besides Methotrexate, there are other dmards

I would like to thank those of you who have offered suggestions that can help with this disease. I had followed this site from afar for several weeks before joining. After the first response I received, I was ready to request that my status be cancelled. I have since decided that I will tough it out because I stand to learn more than if I sit behind the screen and just read other people's questions. My point is, this is hard enough to deal with on its own. I am looking for support and not a sermon that is self-serving in some bizzare quest for rank in the army of PSA. I am a human being that has a lot to learn about what is slowly wrecking my body. I respect the knowledge of the medical community. However, they do PRACTICE medicine. Again, I do appreciate the knowledge that has been shared with me. Just be nice when you give it, and I promise to do the same.



BigFoot said:

No problem Old Gal... you know its interesting I've always had this strange thing with my eyes and gums.. My gums actually swell and I need reading glasses when it gets worse. When I am under control, I can read without glasses and gums feel better. I had to buy heavy duty nail clippers (look like plyers) to cut my toe nails.

Swelling of the face is horrible. I don't have that but I have a butterfly like rash on my face anymore since I've been on longterm Pred. It started in hghschool and and I always thought it was sunburn. (Incidentally it is associated with Lupus- another autoimmune but I don't have that). My wife is very supportive but it has really challenged our relationship and many times I feel helpless... and my kids suffer (2 young ones). Again, I feel alot of guilt for not always being there. Ask your dr about hlab27 and the other markers, they don't necessarily tell you that you have a particular disease BUT they give some clues to help figure out what might be going on...could lead to trying a different med or understand what long term consequences there may be.. like I had trouble brathing at rest and my GP ran a cardiogram. He couldn't figure out what was going on but a chest xray confirmed some inflammation in my left lung... no infection but here it turns out that it IS realted to my PSA. I found this by searching for articles related to the marker I tested positive for...Not everyone will have lung involvement (I guess I'm lucky ;-) )
Old Gal said:

I am sorry my response was a bit vague wasn't it? Yes, I was diagnosed by a rheumatologist. I have pitting in my nail beds, my nails pull away from the beds, the thickness is shocking, and oh how I swell...Right now it is the trigger finger on my left hand that is the hardest to handle. My face and body also swell in the morning after sleeping. I had the bloodwork done and have no clue on how to read the results. The dr said the "labs were alright." How that measures up against others who suffer with this, I do not know. I have little support from family and friends because they can't see what is going on with my body. I get up, go to work, and endure. If the pain and swelling gets under control, I think I can continue to function.

BigFoot said:

Sorry to hear about your pain and stress... For clarification.. when you said you "became a part of this club" did you mean a doctor (Rheumatologist?) confirmed you have psoriatic arthritis? If so, do you have any pitting of the nails or swollen joints? The reason why I'm asking this is because there seems to be a variety of "flavors" of diseases around PSA that are related but have been treated slightly differently like AS or even RA. Also, some other questions that are helpful to know.. are you HLAB27 positive? any other biological markers tested? arthritis related conditions especially when you were "a kid"? mysterous dandruff or bowel disease? I know your frustration.Glad to see you here asking questions... Besides Methotrexate, there are other dmards

Getting the Dx is the HARDEST part, That puts you years ahead of a lot of folks. You are so right about PRACTICE medicine (most don't enough). I'm sorry if I sounded harsh in first post. We have entered sadly an age of "evidence based medicine" While it is touted as an improvement in patient care, it has really become economic. But really and truly if your Doc has moved to Biologics, then you are not likley to get much relief from much else. He or his office should be able help you get the meds you need. If you read around here much, you will learn quickly that "Fear the Disease not the Drugs" is pretty much the mantra around here. Each person's disease is different (its DNA based) but there does seem to be "cliques" especially the AS bunch, The neat thing about this group is everybody WANTS to get better and is open to doing what it takes. Remember though your Dx doesn't follow you from Doc to Doc. Pain control can't occur (usually) until there is disease control. Most of us have had far fewer side effects from Biologics than the DMRDS. But because of that evidence based thing Insurance companies want "evidence" (they aren't necessarily entitled to it however, they CAN'T practice medicine) Several of us can help you with that.

If you are not familiar with "chat rooms" rule one is to develop a thick skin. There is no way to express "emotion" when writing. (we don't have emotioncons although most don't use them anyway) so its pretty easy to misinterpret what one has written (especially if they have a dry sense of humor) there is no way to see what expression is on their face. On this board. most of us have trouble typing so we leave the fluff words out. me, I raised 10 kids, so I just say it and it comes out harsher than it is. You will also find docs in these areas are also emotionally detached. They see 20-30 folk a day "in pain" they become emotionally detached by necessity. You can develop a relationship with them in time but it is based on trust. You ought to see what is in my arsenal of meds, because my docs have learned to trust me. One of the things that helps is to ask them questions - pointed specific intelligent questions. Even printing out a study or article and asking their opinion helps. If there is something helpful grab it, if not skip it. Nice is relative, your "some bizzare quest for rank in the army of PSA" didn't sound very nice. Keep in mind you will get empathy here, occasionally sympathy, but we ALL hurt, so its pretty easy to get past that and into the meat of it (and also to forget where others are at)

But back to your OP. If you have a Doc that Dx's your disease, you are miles ahead, If he is prescribing a a Biologic, remember there are several hundred folks here who would consider giving up their first born to get one. Of the various drugs we take the Biologics are the SAFEST long term. I wouldn't be too quick to can him. Its not like you can take a blood test and have PsA.

I apologize to Old Gal or anyone else if my comments offended. I'm not in some sort of competition for ranking but please consider that as a licensed RPH, I am often involved with helping others. It is a coincidence that I also have PsA. Good luck with your quest to find answers to your questions!!

tntlamb said:

Getting the Dx is the HARDEST part, That puts you years ahead of a lot of folks. You are so right about PRACTICE medicine (most don't enough). I'm sorry if I sounded harsh in first post. We have entered sadly an age of "evidence based medicine" While it is touted as an improvement in patient care, it has really become economic. But really and truly if your Doc has moved to Biologics, then you are not likley to get much relief from much else. He or his office should be able help you get the meds you need. If you read around here much, you will learn quickly that "Fear the Disease not the Drugs" is pretty much the mantra around here. Each person's disease is different (its DNA based) but there does seem to be "cliques" especially the AS bunch, The neat thing about this group is everybody WANTS to get better and is open to doing what it takes. Remember though your Dx doesn't follow you from Doc to Doc. Pain control can't occur (usually) until there is disease control. Most of us have had far fewer side effects from Biologics than the DMRDS. But because of that evidence based thing Insurance companies want "evidence" (they aren't necessarily entitled to it however, they CAN'T practice medicine) Several of us can help you with that.

If you are not familiar with "chat rooms" rule one is to develop a thick skin. There is no way to express "emotion" when writing. (we don't have emotioncons although most don't use them anyway) so its pretty easy to misinterpret what one has written (especially if they have a dry sense of humor) there is no way to see what expression is on their face. On this board. most of us have trouble typing so we leave the fluff words out. me, I raised 10 kids, so I just say it and it comes out harsher than it is. You will also find docs in these areas are also emotionally detached. They see 20-30 folk a day "in pain" they become emotionally detached by necessity. You can develop a relationship with them in time but it is based on trust. You ought to see what is in my arsenal of meds, because my docs have learned to trust me. One of the things that helps is to ask them questions - pointed specific intelligent questions. Even printing out a study or article and asking their opinion helps. If there is something helpful grab it, if not skip it. Nice is relative, your "some bizzare quest for rank in the army of PSA" didn't sound very nice. Keep in mind you will get empathy here, occasionally sympathy, but we ALL hurt, so its pretty easy to get past that and into the meat of it (and also to forget where others are at)

But back to your OP. If you have a Doc that Dx's your disease, you are miles ahead, If he is prescribing a a Biologic, remember there are several hundred folks here who would consider giving up their first born to get one. Of the various drugs we take the Biologics are the SAFEST long term. I wouldn't be too quick to can him. Its not like you can take a blood test and have PsA.