My nails peeled and split. So as result I haven’t used nail polish for at least the last 30 years!
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Yes I think you should definitely try a massage and chiropractor!!
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Methotrexate helps but I still have significant back pain, especially in the sacroiliac joint. Methotrexate doesn’t work for that, so we’re moving on and adding a biologic. So far—and I’m into my fourth and final month—Humira does not help at all!
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I had psoriasis first—still do—even though I’ve been on Enbrel for 4 years. It died down for awhile when I started Enbrel, but recently it had flared on my legs and little spots all over my arms, plus really dry flaky skin nearly everywhere.
The dry, flaky skin is now what I remember my dad having. He also had terrible “fungus” in his toenails that never responded to fungicides. He also had celiac disease. BUT, he never ended up with a diagnosis of psoriasis and he definitely never had PsA! He’s the one person who I knew of that I possibly got the autoimmune gene from—none of my grandparents or aunts and uncles had psoriasis or PsA. As far as I know, none of my cousins have that either, and there are 70+ cousins altogether. One cousin I know of has been diagnosed with RA.
At present, I do think my older sister has had flares of psoriasis and she is so stiff, I swear she has PsA in her back, but her doctors don’t see it that way I guess. Over several years she’s had off and on “skin allergies”, which I think looks like pustular psoriasis. And, what she has on her scalp occasionally sure looks like psoriasis to me.
Anyway, I’m not sure if not having psoriasis is a blessing or not. I’d way rather deal with moderate psoriasis than PsA. I didn’t like having psoriasis since my 20s, but other than being ugly and itchy, it was nowhere near as devastating as PsA for me. I’d give anything to have worse psoriasis if I could exchange it for my PsA and joint damage!!!
Sorry, my comments seem to have gone in the opposite direction of what this discussion is all about. But, to me it’s funny how it seems psoriasis is thought of so worse than PsA—I’m pretty sure here in America we can get biologics easier for moderate psoriasis than for moderate PsA!
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I’m going to check out our insurance website for coverage and any in-network doctors. I’ve been planning on checking on it for a few weeks but I get side tracked so easy, if I don’t do it when I’m thinking about it, I’ll forget like I hadn’t even been thinking or talking about it.
I also have muscle cramps and spasms all over at different times. My daughter in law had to finish driving me home last night because my thigh muscle in my right leg started cramping up. (My oldest son’s wife and their two daughters and I rode together for the bday party.) Thank God she was with me to drive the rest of the way home. I’m praying that insurance will cover it all as well as help relieve some pain.
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I think it’s a great perspective and honestly with you saying that I agree with you. I guess we are more a vain society. One might think it’s easier to suffer in silence with the joint pain than visually with the psoriasis but I’ve been really miserable with pain for a year and half now and would definitely prefer it gone. Joint deformity scares me. I’m only 34 with 3 young children very busy with them. I don’t get to properly care for myself or even take it too easy on really bad days. I’m just praying my joints don’t deform. Are you also suffering from joint deformity? If so when did it start for you? I’m just just worrying about stuff that may or may not happen but I do like hearing others experiences with this so if it does happen I may not be quite as shocked or surprised. @Grandma_J
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@Laura108 we you doing tablets or injections? I’m going to be starting tablets. Dr said may cause some nausea. Did you have issues with that?
@AngieB yes thank goodness you were alone!
For YEARS I have had sporadic muscle spasms in my back that shoot up or down one side. I forgot to mention that to my dr. Thank you for the reminder. Hope you’re doing better today!!
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@Mwitt I tried tablets first but they gave me terrible GERD. I do injections now. With a new very small needle for diabetics, recommended by the pharmacy tech, they are easy. So don’t hesitate to switch if you need to.
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@Mwitt ,
Like so many others who were diagnosed in their 50s (and it seems like a popular age to be diagnosed) I think I may have had signs of PsA for many years, but the aches and pains resolved themselves and the stiffness and other symptoms would go away with p.t.
I had p.t on my back in my 30s and my neck in my 40s…but for the most part I felt good and did great until around the age of 50.
Yes, I have terrible joint damage in my feet/ankles—that’s why I bought the scooter. I have damage in my cervical spine and worse, in my lumbar spine and sacrum. I can’t walk much without resting (I’m not severely overweight, either.) My hands look slightly strange, as well as my wrists. I’m lucky actually because so far Enbrel has slowed the damage down in a lot of those places (not my feet, tho).
I would advise you to seek aggressive treatment as soon as possible. It’s sounds like you’re in the right track. Don’t give up. There are tons of people on biologics for many years with good success.
I have to mention, I’m now taking sertraline for my anxiety (only 25 mg—a child sized dose!) and it’s helping me cope so much better, it’s unbelievable! I was so in denial that I had more than normal anxiety, but I guess this proves me wrong—AGAIN!
Thank you much for sharing that with me.
I’m sorry you’ve had so much damage already but thankful for you that enbrel is helping some areas.
Thank you for your advice to seek treatment. I have so many people encouraging me to not to take medication. To alter my diet, get massages and chiropractic adjustments, essential oils etc. when I can’t possibly explain to the them what I’m going through because nothing at all is visible yet. (And I pray never) but looks like to anyone that nothing is wrong with me. Just 4 weeks ago after 5 or more minutes of rest it would take me 10 minutes to be able to walk on my feet normally again. And leaning over the tub to give my babies baths and trying to straighten up again… just wow. Felt impossible. I never want to feel like that again… prednisone has helped me so much but I know it’s only temporary. And I’m hoping when I start methotrexate it works great and hoping for no bad side effects. I need to look into what biologics are. I read everyone talking about them in here but haven’t looked into it yet and my dr. Hasn’t mentioned it.
Do you you think your anxiety is from PsA? I have had so much anxiety every since all of this started too. I’ve gone through counseling. They were calling it post partum anxiety and OCD but I was breastfeeding and unable to be medicated. Most days I feel a lot better now but some days something triggers me and I feel a mess. Just have to take each day at a time.
I’m so glad a small dose is helping you to cope better. You have enough else to deal with you don’t need anxiety on top of it!
It’s pretty typical to start with a disease modifying med (DMARD) such as methotrexate. If it doesn’t work a different DMARD might be tried or a combination of them. The next step would be a biologic.
Joint damage can take a lot of years to show up, but once it happens it’s permanent. I was diagnosed when my second child was little, not even a year old. He’s almost 12 now. Getting better control doesn’t mean that there’s no damage but it does mean that it’s significantly slowed.
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@Stoney
Thank you! Each time someone explains a little something. It’s all starting to make a little more sense to me.
I’m wondering now if I should ask my Dr. Why he specifically chose methotrexate and what are other option if there are any for me at this point.
So far I do not have any significant joint damage.
Is it possible to completely prevent it? Or just slow it down and eventually it will definitely happen?
@Stoney
Well you fully understand the struggles of being in pain and taking care of small children. I feel like no one that I’m close to will ever understand the daily struggle of just doing normal life things with my kids. On top of it I homeschool them (I’m extremely passionate about homeschool and enjoy it very much) but having to be creative and with my kids 24/7 while being in pain certainly make my days hard and stressful.
Methotrexate is a pretty standard start. I was started on plaquenil because I w still nursing my son when I started it. Methotrexate didn’t work for me. I wad switched to leflunomide after 6 months. It was a few years before I started a biologic. That’s a pretty standard progression.
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Personally as PsA is based on having an abnormal immune system and for me I think of my immune system as something akin to an out of control child, capable of the most terrible tantrums but also capable being sweetness and light, I don’t believe in second guessing much of it as in once x bit of me hurts, that means that x bit will never feel better. For me I’ve had all sorts of bits of me be truly off the scale only to find out later that those bits are now fine. For me mine moves around quite a lot save for my right foot. That’s a blessing though in a way as it stops me thinking bits of me won’t improve.
I couldn’t hack mxt but others on here do fabulously on it. So I was given another DMARD called sulfasalazine. That eventually worked brilliantly (on the very max dose of 6 tablets per day) but then sadly after about 7 months decided not to work anymore. So now I’m just starting a biosimilar of enbrel.
And I’m not worried if that doesn’t work for me as I know given I’m only really starting out that there’s a host of others to try.
But what was invaluable to me was simply good old fashioned talking therapy which I still do. That and learning some mindfulness and very much learning that if today is a totally crap day tomorrow might be an awful lot better.
It’s taken some time to learnt to roll with it all much better and it’s certainly a better place to be in.
And as regards dietary changes and complementary treatments, I know that if I eat something too sugary I’ll be worse and if I don’t take time to just relax my buzzing brain properly I’ll also be worse. The best thing for me though is exercise and right now I’m about to take my dog for a walk before I start my work day. That permits some type of mindfullness and exercise and smiles - all good for starting the day off right.
Certainly letting go of the fear and the what if’s (both perfectly rational though) helps enormously.
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@Mwitt that is so sad. That pain and stiffness is horrible! That was the clincher for me—when I couldn’t take it anymore was that sharp pain in so many places when I tried to move after being idle for just a few minutes…prednisone also helped, but only temporarily. I actually practically begged my rheumy for more, but he said it wasn’t good to continue prednisone. That’s when the moderators on this forum got in my face and explained to me I needed to get over my fear of the meds (biologics) and do something before that damage was too great.
Ugh, I really feel for you. I have 4 kids, each with children of their own, and I worry about them getting this disease…our son and two daughters have some skin problems off and on that resembles psoriasis, and my one daughter with five kids ages 1 to 14 years old has had some weird aches and pains. I notice my son flexing his hands and have asked him why he does that…oh, they just get a little stiff, is his answer… 
I feel like I’m tough and can take a lot, but this disease can really wear a person down. Like you said, we look healthy, so it’s nearly impossible to get people to understand what we’re going through!
A recent incident I’d like to share: I had a meeting at work last week which was 4 blocks from my building. My 2 coworkers said let’s walk there, but I said I better drive. They chuckled. I was mad. I said this isn’t a laughing matter! They denied laughing. I told them I used to walk really fast wherever I went, but now I’m like a snail and I have to rest a lot. I agreed to walk when they said they’d go slow…I said don’t let me hold you up, but they were really nice about it at that point. It’s just so hard wanting and wishing to have everything like it used to be and not having to be so wimpy!
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When I was diagnosed with PsA, I thought the same thing, but after my rhuemetologist sent me for a dermatology check, I found out the eczema that my gp said I had in my ears for years was really psoriasis. I’ve not had any other signs of it yet.
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Hi @Mwitt,
I’ve been diagnosed with PsA and I don’t have psoriasis, but my mum has had it all her life didn’t know what it was and only sought help and received treatment late on in her life. What I do have is very dry skin and have been known to have eczema as a child and teenager but as I’ve got older the eczema has disappeared. I used to have severe asthma as well and this was linked to my eczema.
Like you I questioned the diagnosis at first, as I wasn’t sure where my rheumatologist was going with his questioning and the links he was making. However, it eventually added up and the symptoms matched perfectly as well as the treatment (although still working on this one). From what I understand diagnosis can change with rheumatology conditions, so as long as I’m being taken seriously and having treatment that seems to be working towards getting me better, I’m not getting to hung up on the name of the condition. Even when people ask what’s my diagnosis and I say PsA or psoriatic arthritis they don’t have a clue, they just pick up on the arthritis bit.
Good luck with working out what’s next in your treatment phase.
Nicole x
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