The uphill journey continues

I had an appointment with my rheumatologist yesterday (8-10-21). I had already sent him an email telling him I have never felt worse. I was switched to Taltz three months ago after a year plus on Humira EW (and Embrel and Cosentyx). I explained in my email to my doctor that something had to be done. I cannot do much of anything and things need to be done around my house. I suggested PT and maybe pain management. I had hopes that if I could get the amount of pain meds increased, I could tolerate doing some work around the house.

We had a long appointment. He told me he had hoped that the Taltz would have done more by now, and we agreed to keep going with it for 3 or 4 more months.

He sent me for a PT triage and I will start PT tomorrow. I have had considerable loss of range of motion in my hips and shoulders. Sounds like fun.

My mid to low back has been very painful for almost three months now. He poked and prodded and said it sounded like the large sheets of ligaments and tendons coming up from my SI joint that spread out over and up the sides were badly inflamed. We passed on any more steroids for now but he had both shoulders, hips and back x-rayed to see if calcification is beginning in those areas. He also ordered a full range of blood test and my state required annual drug screen.

He wrapped up by saying he did not know what else to do for me. Not the message I wanted to hear.

I stopped for the PT triage on the way out. The therapist and I had a long talk and he set up further treatments. He did say that if I felt disability was in my future it would be best to give the PT a try because it would be one more step toward saying we tried everything.

I have been very down the last month or so. My pain is such that I may as well not be taking the little pain meds I can have, they do nothing. Since I cannot take MTX or NSAIDS, I have nothing other than steroids for inflammation. I have been ordered to restrict my intake of Advil (et al) and Tylenol because my liver function test are showing some concern.

I have expanded my use of the Delta-8 THC that is now legal here. It does more for me than the Oxy does.

I am still working from home, but may soon have to travel one or two days a month. I am not looking forward to that.

As a side note, my wife seems to have gone on strike for the last 5 years. She does nothing to help keep the house clean and I can no longer do much of anything to help the situation. The stress from living in a messy house is taking a lot out of me. She recently developed some angina issues that her doc is controlling, but that does not explain the previous 4 1/2 years. I have had no success in talking to her about it. I am ready to pack my bags and get in my truck and just leave.

It makes me feel like my wife thinks that since I cannot do anything that she shouldn’t have to do anything. I am at the end of my rope right now.

I have battled drug resistant depression for almost 30 years. It has been controlled well since 2008, after they installed a Vagal Nerve Stimulator. But, I still can feel myself heading downward. I will see my psychiatrist in a few months and will talk to him more about the situation he is aware if with my wife.

I am really beat up right now and do not know what to do. Doesn’t sound like my pain situation is going to improve anytime soon, or my home life. I am finding myself fighting multiple battles right now. The PsA, my wife, and the pain and limitations.

I am running out of rope to hang on to.

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Hang in there , please. As trite as it probably sounds to say that.

Just 10 days ago I was at absolute rock bottom, verge of nervous breakdown, panic attacks etc

Give yourself space and room to breathe.

Take whatever time you need just to chill snd think, even if you just want to drive off a bridge right now and not exist which is how I described life 3 weeks ago to a dear friend.

Spend some time if you can, doing something you enjoy.

I’m not pretending things aren’t shit but perspective and time even a short amount, really helps. As does talking it out, or writing it down just for yourself even.

As a result of thinking on stuff, I’m now feeling a small degree of control, I am applying for PIP again and not afraid to say sometimes I can’t manage the tea round at work!

I am always a sympathetic friend if you need to vent or just chat x pm me x

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Tamac feel so in tune with what you just wrote!
The Covid emergency resulted in my being able to work from home just in time for me to be stuck in bed without being able to move with atrocious lower back pain for threee months or so. The privilege of being home bound is not without its drawbacks, coupled with our pain being imperfectly perceived by family, and depression being catchy. The mess in my house is frightening at the moment, and I think it is important if we can to try and prioritize as much as possible our realization of our physical and mental limits with consequently more rest, in my case less emotional eating and a return to intermittent fasting which ultimately helps mood, and slowly try and arrange for help even from outside the house if we can.
All the best,

please tell us about any experiments with diet eliminating certain groups of food such as gluten dairy sugar grains etc and see if mood improves in this way . All the best

Tarmac, I’ve been thinking about answering this for a while. You’ve had such a rough run over the last year or two, and I must admit I seem to be having my own never ending issues so I’m totally devoid of answers. The problems with your wife and resultant stress is likely not helping either.

You are doing all the right things though - PT, organising to talk with your psychiatrist. I can’t help but feel though that the Rheumy’s attitude wasn’t terribly helpful. Poo makes a good point too. Though I know the thought of yet another appointment might not be too appealing right now, maybe it’s time to look for a second opinion?

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I’m hanging in there. My first trip for PT was fun. They are going to work on heling me get range of motion back in my hips and shoulders first. Right now I am pretty sore from the PT.

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Hi there,

I’m in the UK too, this far 5 years since PsA hit me like a truck so I’ve tried mxt and it hated me so we had a very short relationship, sulfalazine which loved and worked for a while too. Benepali (biosimilar to Enbrel which only worked for three months out of 11 months. Imraldi (biosimilar to humira) which also hated me - I lasted a mere 8 weeks on that, and now on Cosentyx for the past 18 months which is doing lots better than anything previously.

My rheumy is hot on treating to target as per PsA protocol so I’m not encouraged to languish if something isn’t working for me. Incidentally in the UK there is a methodology NICE wise for funding on what biologics should be tried and in which order. So if humira or its biosimilars have failed for you, the usual next step is an enbrel biosimilar, before trying an interleukin one like Cosentyx and its sister Talz and before trying the JAK inhibitors like the one that @Amos is now on which incidentally has just been approved in the UK now for PsA. I now know of a couple of other people on it and like you @Amos their reports are pretty positive.

So whilst of course the patient must consent to the biologic the choice of what comes next is fairly limited funding wise. What is your PsARC score as remember you need at least three swollen and affected joints to be considered, every time a new biologic is being considered? Biologics of course tend to throw up far less daily side effects than the first line DMARD meds too. I was the opposite to you, I literally couldn’t wait to start biologics as I saw any of them being the route to tame my disease activity and indeed halt my disease progression. My only goal always is take all offered meds in an effort to get this disease under as much control as possible. To date thankfully I’ve little lasting PsA damage but can’t say the same for PsA symptoms especially in the weather the UK is presently having now.

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So sorry to hear this@Tamac - one question for your rheumy - why doesn’t he consider JAK inhibitors now? There are several to chose from and more coming on stream accredited in the UK anyway for PsA. Those surely should be considered? The way you’ve described it is that Talz for the next few months is the end of the line. But it’s not.

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I’m sure Taltz is like all of them, you have to give it 6 to 12 months. I’m no worse off than I was on Humira.(or Enbrel or Cosentix)

I asked my doc about adding one of the pills for DMARDS or JAKs. The first thing I took was Otezla. He wants to let the Taltz run a few more months. I don’t think he wants to suppress my immune system more by adding anything else. He is also evaluating my liver numbers. My latest LFT is still showing some issues. He said I could have Advil and/or Tylenol occasionally. I have been using the Advil/Tylenol mix with good results when the inflammation gets really bad. My docs knew that my liver would have issues after taking an antidepressant called Serzone for almost 20 years. It worked until I got my VNS implant and my psydoc hated to change it. Three years ago we made the transition to a new antidepressant, that is always fun for about 3 months. With that done, my depression is still under control and my liver is not getting beat up as much anymore. Liver is not going to get better, the damage is done. My numbers are not real bad, but enough they want to hold off on anymore meds that hit the liver hard.

I started PT three weeks ago and it is killing me! Doc wants to try and get range of motion back in my hips and shoulders. I am going twice a week with exercises to do at home. Low back, hips, and shoulder exercises. It is really painful the next few days, then I go again, but I am going to give it a few months to see if it helps in the long run.

PT triage coordinator did tell me if I thought filing for disability was in my future, I had to do PT anyway because they would want that done. So, I’ll have more of my foot out the door.

I think I have a good Rheumy. He was just frustrated also last visit. After one DMARD and 4 biologics, we really haven’t seen much success. There is a new biologic finishing final testing right now that hits two ILAs. The success has been very good. Not sure how far down the road it is. I know that I can talk Taltz EOW, but we are going to wait.

At 63, I am just struggling still with the fact I can no longer do things I could 5 years ago. My brother is 70 and he runs circles around me, some. The last 4 months I have just had to deal with that and it has been hard. I have gone from going 120 MPHS to nearly zero in 5 years. Mentally, it is hard for me.

Prior to the prostate cancer diagnosis and then the PsA diagnosis 6 years ago, I had plans to get my DBA (Ph.D in business). That’s out because of the travel and weekend stays out of town. Now, instead of moving up at work, I am struggling to hang on to what I have,

I am just going to have to let some goals go and set new ones that I can accomplish. But my mental anxiety is day by day right now.

Oh. My last visit my doc added x-rays of my shoulders, low spine, and hips to the list. He sent me an email and said nothing major, but like everything else, starting to show some signs of arthritis. So showing “some signs of arthritis” now includes hands, feet, neck, and knees.

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