Learning to live with PsA

This is my very first post. This transition between being very active, to in a period over six months, of only being able to doing short term bursts of activity has been very difficult. Resting my knees between each activity has seemed like a prison. I have always been very active in the summer, boating, camping and gardening. As summer comes upon me, I feel a grief coming on me and am hoping the medicines will work and the pain will abate by then. I am learning to live with this. I have never been a depressed person, but am struggling with this a little.

As with many of the posts I have read on this site, being able to describe this or discuss this with other people has been the other challenge. You can actually see their eyes glaze over when you talk about it. My husband is a Physician and has been wonderful. He understands the processes very well. My GP on the other hand doesn’t have a clue. She just thought I was crazy. I reminded her that the Rheumatologist has sent her a letter, which apparently she didn’t read. After she read it, she patted me on the shoulder and sent me on my way. By this time I was crying, because I was frustrated she wasn’t listening to me. Needless to say I will be finding a new GP! I have no time for people in her position that has neither the time or patience to try and understand this with me.

It has helped writing this all down. Thank you.

Welcome aboard @steen - glad to see you found this little community. Feel free to ask questions, or use the search function if you want to see how other folks have dealt with certain situations (though of course, still ask if you have extra questions, someone will be happy enough to help as they can).

You are dealing with something we all have - the loss of ability to do things, and the need to turn the way you do continue to do things needing a twist in perspective. It’s not an easy journey, and unfortunately, there’s no real good way that I’ve found yet to make it easier. All you can do is take the meds, do the treatments recommended by your rheum, and keep pushing forward (with regular rest) as needed.

It’s perfectly normal to feel depressed with this situation, but do your best to make it so that it’s not the only thing you focus on. That does not make for a fun time.

My now former primary care provider stated that as my blood tests didn’t show the arthritis should be that bad, that I’d probably be fine. While I was walking on a cane into her office. And grimacing and adjusting myself in the chair I was in constantly so as not to be in pain.

With a disease where blood-work is not always a descriptor of intensity.

This, coupled with the fact that her office doesn’t like to return calls, listen, or follow up, has led me to have an upcoming appointment on Wednesday with a new one, as you’re planning to do. No reason to keep going to someone who isn’t going to do their best for you.

Hi @steen

So sorry you’re coming to terms with all of this. I’m very glad you have an MD hubster who understands. But you have no time to tolerate these other shenanigans. I’d be looking for a new GP too, in your shoes. [quote=“steen, post:1, topic:6921”]
she patted me on the shoulder and sent me on my way
[/quote]

Please reach out with questions or concerns. We are here for you.

Hello steen and welcome!

Is it your knees that are most affected? We’re all different, no blueprints, but I’ve had only one 9 month period of living pretty much as you describe and that was 5 years ago. Thought it was worth saying this as I can see from your profile that it’s early days with the meds … you may well see quite a difference. I hope so.

Glad you’ve joined us!

Welcome Steen!

I am also new to this disease, and understand the frustration of not being able to do all the things I like or use to do.

Luckily you have a hubby that knows what is going on. My guy doesn’t think I am all that sick, because I look fine and can still get some things done. He doesn’t understand the need to naps or resting.

I actually had a girl I worked with tell me how lucky I am because I had to quit my job and file for Social Security Disability. She says sure your ankles hurt but not having to work is worth it. Really!?!

I am glad you found this group, they have been great and I don’t know where I would be right now without them.

Thanks everyone for the welcome! My knees to this point are all that are affected and hope it stays that way. The pain started about 6 months ago. What made it unusual was about a month prior to the pain starting I had a meniscal tear repaired on the right knee. I sailed through the surgery and the post operative PT. I had no pain until about 1 month later when THIS pain started and never left. I went back to PT thinking it had to do with my surgery. It took me a while to figure out the timing of the surgery and the knee pain had nothing to with each other. I do have one question, the rheumatologist started me on Plaquenil and to date I have not had any relief. How long does it take? I just finished a Medrol Dose Pak which seemed to help for about 3 days.

Plaquenil’s light touch … well that’s how I’d put it. Here in the UK the ‘trial’ period for DMARDs is about 3 months, if they don’t work or don’t work sufficiently within that period there’s often a re-think. I think the same holds true in the US.

Do you know if your rheumy has a plan in mind? If I was started on Plaquenil I would want to know what my rheumy’s thinking was, both the rationale and the next line of attack.

Yes, plaquenil or any of the disease modifying meds take time to start working. I think that I probably started to notice a slight difference about a month into starting it.

You mentioned that you are sure that the knee pain that developed post surgery had nothing to do with the surgery. It was likely indirect. I’ve had post surgery flares with almost every surgery that I’ve had. Mucking around with your knee certainly could have been enough stress to your body to contribute. I don’t want to say cause. . . your psoriatic arthritis was just waiting for sufficient insult.

2 Likes

A warm welcome from me too, Steen. Well, your GP may not get it, but we sure do. This is one slippery fish of a disease that you have here, and many of us have been undiagnosed, blown off and misdiagnosed, some of us for a very long time. The best news, though, is that you have a diagnosis, and that means there is a prospect of feeling better. It may take a while, but chances are, you will get there.

I think you are in the most difficult phase of having this disease right now: we call this The Gap. Here’s a piece from our Newbies’ Guide that explains. Of course, depending on the severity of your disease, what drugs you respond to, and what your insurance will cover the bad news is that The Gap can easily last a year or longer. Let’s hope not! Once you and your doctors figure out what you respond to in the way of medications, and you work out the lifestyle adaptations that help you cope with the hand you’ve been dealt, things get a lot easier. Really they do.

So join in our conversations! We’re glad that you’re here (even if it’s a bummer to have PsA), and we hope that you’re glad too.

Seenie

Hi Steen, and welcome! I hope for you, too, your knees are the only joints affected and there is a med that will fix that…there are so many people who sort of go into remission from the right med, and hopefully you will be one of them. It IS depressing to feel like you have to avoid (or at least proceed with caution) so many of the normal, everyday activities that were easy in the past. You will sort of get used to that, but IDK if I ever got over the fact that I’m not the same active person I used to be and thought I’d continue to be into my old age…I do have a happy outcome with Enbrel and, although I had moderate disease–it did cover many of my joints, tendons and even tissue (it felt like psoriasis had somehow attacked me under my skin–sore and painful to the touch in some places) and when I think of the overall ill feeling all the time–and the fatigue–I’m sure you’re dealing with that–that my almost three years on Enbrel has nearly “cured”, I’m telling you this because there is HOPE for you! It’s just the right med or combination of meds.

Usually we go through the NSAIDS, then DMARDS and some prednisone or something similar, and finally a biologic. I was lucky my doctor bypassed the DMARDS basically because I’m hypersensitive to meds and undoubtedly they would not have agreed with me, as NSAIDS sure don’t, so I was really afraid of the biologics. I have had absolutely no notable SEs from Enbrel, and I’m pretty sure they are agreeable to most people. Good luck in your quest for good health once again–you’ll get there–keep pressing on! It’s great you have a physician husband who understands – and so do WE!!!

Hi Steen,

I so get the grief aspect of the loss of function and having to live with the pain. It’s exactly right in my view to think that you’re grieving as you come to terms with it. It actually helped me emotionally when I realised that was what I was doing. Since I’ve experienced the more traditional kind of grieving too I could see then that I would eventually accomodate the loss as we just ‘do’ eventually anyhow. It stopped me being so terrified and it stopped me being so unbelievably angry. Losing both of those reactions was a huge help. Now I’m just ordinarily sad (if there’s such a thing!) that this is my future and that in probability this will be how the rest of my life will be - as in taking medications, hope they work, if they don’t change medications and hope they work etc etc. And somewhere in between live my life!!!

But the real bonus of coming to terms with it all and putting it on this footing is that I now very much live in the present, especially on good days and wring as much enjoyment out of them as I possibly can. As regards the days that aren’t so good I’m learning to believe there’s always a better day just around the corner.

For me I’m entirely convinced having a bunion correction operation in October 2015 quite simply ignited my PsA. And I bitterly regret having had it done, even though it was medically necessary. I’d much rather still have my weird big toe joint that ached a wee bit and made shoe wearing a challenge than the horror of this awful disease, that’s for sure. Now I can fit into all sorts of shoes but sometimes literally can’t walk, or use my hands properly. And before then I never had this stabbing pain in either side of my ribs which can sometimes take my breath away or seriously raging tennis/golfer’s elbow either. And before that I never got this tired, so unbelievably tired.

Listen to the guys on here who have been through many of the medications, they so give you hope. I’m only just about to start that journey shortly and still wish with all my heart I didn’t have to. But sadly I do. Many say ‘fear the disease, not the meds’ and of course they’re right but it’s still more than scary standing on the top of that cliff edge. I just hope my particular parachute is a good one. :worried:

Thank you for such a thoughtful response. I am getting on with my garden and planting. I do as much as I can each morning and then rest in the afternoon. I recently did a Medrol Dose Pak and it was like a miracle for exactly 5 days. Now I am back to the old pain, wishing I could take another round. I have refills, but know I need to space those out to prevent adrenal dysfunction. Your history of a bunion correction peaked my interest as I had a meniscectomy of my right knee. I know the two have to be related although I cannot find it in any of the literature. I am like you, though, I could have walked forever on that torn meniscus. It was somewhat painful, but nothing like this. I wonder if there are any studies about this correlation. I will have to research that. I am not having much hope the Plaquenil is going to work. I am ready to get on to the next med. My rheumatologist appointment is not until mid July though. Thanks again for your comment and my best to you!

My pleasure Steen,

In skin psoriasis there’s this thing called Koebner’s Syndrome. Lesions (not just of psoriasis either) forming along skin trauma sites. It was much talked about in the 1980’s when I was a teenager and when my skin psoriasis was truly horrific. It simply covered me from head to foot and was more than just awful. Physically, emotionally and any which way. I was told then my skin psoriasis had ignited due a pretty awful bout of strep throat aged 13. I don’t disbelieve that to this day. And indeed today it’s still commonly said skin psoriasis does just happen like that. Mostly at that time all the talk of this came from scientists in America. I was in Ireland then but my much older sister (a scientist herself, now a patent lawyer often involved in getting the types of drugs we now need to use get a patent or maintain its patent) was living in America and had just had a child who sadly was also succombing (spelling?) to skin psoriasis.

So with her knowledge and understandable tiger mum attributes, she at that time researched the hell out of it and of course passed anything useful to me.

So there’s also this thing called Reverse Koebner’s syndrome which is when you have a trauma to the site of the skin psoriasis, and then all of a sudden the skin psoriasis takes a complete hike. And just disappears. That fascinated me as a teenager and no I wasn’t into trying to self harm either. LOL. But I thought well if I shave my legs on a Sunday with a normal hair removing razor, (which made me bleed then lots) maybe in two weeks time I can go that disco without having to wear trousers. Showing my age now aren’t I? I’m 55 incidentally. But it worked. Mostly.

By the age of 20 or thereabouts and most likely not because I shaved my legs (didn’t shave any other part of me by the way other than underarms!) my skin psoriasis anyway just got tired of being so inflamed and calmed down quite considerably. I had also worked very hard on dealing with stressful issues or rather how I reacted to them. So it all settled down quite nicely to a few bits on elbows and occasionally knees. I still maintained my regime of putting on so much moisturiser on me after a shower or a bath that possibly I should just re-shower or re-bath! I also developed an allergy to the sun which at the start wasn’t helpful as sunshine and skin psoriasis don’t like eachother so doing sensible sunbathing truly can help skin psoriasis. My guess was that the allergy came from smoking cigarettes as in injesting nicotine. There’s lots of stuff on that too.

So I muddled through very happily frankly. In 1999 I fell badly and smashed my shoulder awfully. Took a year of rehab to get it back to proper function. Wouldn’t let them operate as I was too worried about developing osteoarthristis as a consequence so endured 4 months of significant pain and disability instead. But all skin psoriasis then, such that it was, disappeared altogether virtually overnight by about day 3 after my fall. I’ve still virtually no problematic skin psoriasis since except for this past year when I was told I now have PsA. And even then it’s really minimal. I credit that slightly more skin psoriasis presently to simply the stress of realising I’ve now got PsA and indeed suffering from PsA.

So blow me my guess is that Reverse Koebner’s Syndrome is still really relevant in this disease called ‘psoriasis’ whether it’s either the skin type or the infalmmatory arthritis type, but no one seems interested in talking about it any more or even just Koebner’s Syndrome.

I’m completely convinced that if I hadn’t my foot surgically broken in two places to repair my fairly gross bunion I might not have PsA now. I wonder whether if they removed the plates and screws in my foot would it then all disappeared too? After all I broke my shoulder really badly and didn’t suffer this and I also broke my ankle later very less seriouslessly and nothing happened inflammatory arthritis wise. But once I was permitted to walk properly after my bunion operation, I’ve been in this pain, not just in my foot but also my hip, hands, one elbow and ribs. And who knows what else might also decide to be a severe pain in the what’s it in the future?

I could be utterly wrong and all this is just an unfortunate coincidence. So be it if it is but presently my intuition doesn’t tell me that. So I will continue to search and see if any appropriate specialist wants to discuss this with me.

In the meantime, I’ve now got joint erosions developing so I just must get on with all these medications and arrest that. Sorry I’ve probably gone on far too long too.

Love you’re continuing to garden and don’t forget however scary they seem on Dr Google there’s is more than many drugs to try too. They apparently really do help and so I live in hope. But if I were you I’d be bringing my rheumatologist’s appointment forward. I’m presently of the view that I have to live all my today’s. And frankly just today is the most important thing. I’m quite resigned (now finally) to side effects but I’m not resigned to continued incapacity and hanging around just waiting. So the side effects could make me miserable but there’s little point of them unless my capacity also increases. Just my thoughts for now. Have a good weekend.