My situation with psoriasis and PsA

General
1

Here’s my story…

My neck has hurt since I was in around 7th grade, my family doctor at the time prescribed me muscle relaxers and told me to take Advil. The muscle relaxers made me sluggish and I stopped taking them. I learned to live with the pain, it has hurt every single day all the way up to present.

Then in my early twenties, my knees started hurting me. Not badly but enough to be uncomfortable. I then started getting dry skin on my right knee cap. I though nothing of it and just scratched at it. It kept getting larger and then my left knee cap developed the dry skin. It then spread to my genitals (EEK) which was VERY uncomfortable.

At this point I sought medical help from my primary doctor. He just gave me some creams that kept it at bay but didn’t improve any. It spread to the corners of my eyelids, and the patches on my knees enveloped the entire knee caps and a couple inches above and below.

By this time I had developed serious depression, which I just dealt with, and the knee and neck pain was worsening, which I sought a chiropractor for. Nothing was seeming to help. I had gotten married and moved to another state by this time, and switched doctors a few times.

Finally I found a dermatologist who injected steroids directly into my plaques and they started clearing. I couldn’t see him any longer due to his schedule so I switched AGAIN, and this time I was put on the gel form of Clobetasol, which really works for my knees. For the genitals, I was put on a synthetic vitamin D cream that peels the skin… forget the name but I hate the stuff. This dermatologist recommended me to see a rheumatologist due to my joint pain and pitting in my nails (which I was told was due to my vitamin deficiancy, although I take a multi-vitamin…).

The rheumatologist, who also happens to see my wife (more on that in a minute), speedily diagnosed me with PsA. No question. I was put on Sulfasalazines for a few weeks and they just made my stomach hurt. We passed on the Methotrexate because, I don’t want to take chemo and would like to have kids at some point in the near future. I took prednisone but didn’t see any improvements.

She recommended Enbrel to me. It then took over 2 months to get my insurance to cover the medicine in its injectable form. What a stress that was… In the meantime I was given samples of Humira to get the process started. I’ve taken 5 shots of Enbrel so far. I haven’t noticed any improvement as of yet.

I’m not sure if it’s due to the season, but I actually feel a lot worse the last week. When I wake up, I am fatigued. (BTW I also have sleep apnea and use CPAP) My first steps of the day are killer as my feet and lower back hurt until I’ve been going for a while. My fingers hurt to button up jeans and shirts. My neck always hurts. My knees hurt so bad that I have to sit down regularly to rest. Walking up stairs is ridiculously hard.

I work as a Diesel Mechanic and I am scared that I may not be able to continue working in this great paying job for very much longer… it’s hard just to get to work every day let alone do some of the very strenuous tasks that are expected of me. I feel fatigued most of the day except for about 2 hours when I feel “normal” again and can concentrate. Brain fog comes and goes.

I also have been going to see a physchiatrist and counselour, and was diagnosed with dysthymia and moderate depressive psychosis. I was taken off of my ineffective medication, Lexapro, and put on Viibryd. It has helped my mood quite a lot, I’m not on the verge of a breakdown and suicide anymore. The way Viibryd works though makes it impossible to take Tramadol. I was prescribed Tramadol after going to the hospital a couple months back and about had a Seritonin Syndrome happen… I could barely move or walk.

I’m worried as of late though because it seems as though my pain is progressing. It seemed to get worse after my diagnosis, if that makes sense? Like my body is rebelling to the medication…

My wife has been diagnosed with RA, and is on Humira injections. We understand each other’s pain pretty well at least. Most days we slum around the house trying to get the energy to clean and do chores. It makes it difficult having both of us with issues.

My wife’s sister has RA and AS… she is on Metho.

My wife’s mom has RA, Lupus… I don’t know what she is on.

Sorry for the long read but that’s me.

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by the way, I’m only 29.

my wife is 27.

my sister in law is 20.

my mother in law is 49.

3

Welcome to the group!

That's a shame that it took so long for you to get diagnosed. For some people, there may be seasonal flares, or with the change of the psychiatric meds, it may have set off a flare. Either way, the rheumy is right treat your PsA aggressively.

It sounds like you have a built-in support system for many of the health issues that you are going through. As the medications start to work, your overall quality of life should start to improve. When diagnosis is delayed, it can put a person in a tough situation, where you feel like you won't be able to dig out of the hole. If need be, are you eligible for a medical leave?

Good for you, that you know that some meds are not compatible with reproduction. Especially since some meds can take many many months to clear out of your system. Your wife's RA is well controlled?

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Thanks for the reply stoney.

I'm not sure what the situation is with medical leave at work, I can take off if need be but won't have any more vacation time until august (what a way to use vac days huh) and only get 2 sick days per year. Otherwise I will not get paid for the time off. Which money is tight right now (another stressor to set off my PsA flareups......)

My wife's, she just got diagnosed around the same time as me, and she's been suffering badly for the last few years and since her rheumatoid factor never tested positive the other docs just thought she was in minimal pain and told her to take tylenol. She has sero negative (sp?) type where you have to basically rule everything else out first. Same as her mother. They wanted to put her on the chemo as well but like I said we were actually trying for a baby up until we were diagnosed, and was having problems as is...

Appreciate the support, keep it coming guys, it helps. :)

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That's even rougher, that you're both going through this at the same time. My PsA is completely seronegative, and even my sed rate isn't elevated. Thankfully my rheumy was able to diagnose me quickly, and I was on my first DMARD within 9 months of first seeing her.

If your wife hasn't already been told, there is a good chance that she will experience remission when she does succeed in getting pregnant, but she should plan that the remission will end. There are meds that are compatible with breastfeeding, so she should look into that as well.

If you have an HR person at work, you should consider finding out about leave issues. 2 sick days per year? Ouch.

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I’ll ask my HR person about it, I’m not sure what to do. Would taking off work make it any better? Or just relieve pain until the meds start working? I’m afraid that I would come back from leave and it would still hurt just as bad…

Does the biological meds usually make the pain go away, for you guys? Or do you still experience pain?

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You may want to talk to the HR person about what your options are. Taking off work may or may not be helpful. Some people do better if they can keep occupied, unless the fatigue and/or pain levels are too high.

For most, the biologics make the pain go away mostly. I don't have any personal experience with it.

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saw my rheumy today. I am going to finish out this months supply of enbrel injections and if i don't see improvement, she is going to put me on remicade infusions. she also put me on prednisone 10 mg and upped my vicodin to 10/500 mg.

heres hoping for relief!

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I am on humira and have had a lot of relief. Hang in there.. :)