So? This truly stinks!

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When the sulfasalazine isn’t yet doing anything. Over 3 months now and counting. Don’t forget I simply can’t tolerate mxt, so very sadly. And the pelvic fractures are healing but - oh so slowly. What am I to do with capacity issues, or rather a severe lack of any of them? Dexa scan isn’t till very end of September. Shall I just say ‘eff it’ very Irishly and go back to steroids? I can’t cope or be coherent with this level of incapacity, pain and sheer inability to do anything worthwhile. I need my ‘today’s’ to be a whole lot better. Not terribly interested in suffering this much till mid November, either till next rhuemy apointment… At aged 55 that just makes no sense. Sigh… Guess I’ll be told to suck it up but am seriously not interested in doing that. As I can’t function and I can’t work coherently and my bank balance isn’t rubber based so it can bounce as much this level of incapacity presently disctates.

So. Ideas anyone?

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Well suck it up, sucks. I don’t have people around me that actually say that, but I feel like that is what they are thinking.

I hurt my low back last week so the PsA is jumping on it.

I am still learning to deal with the can’t do much of anything problem, but I sit and breathe and look forward to tomorrow as best I can. I suffered from bad chronic depression for over 20 years. I had to learn to take it one day at a time sometimes. I gave up on a the meds working and just kept telling myself that tomorrow someone will find a cure. It took 20 years, but I am cured now thanks to science.

I am trying to take the same attitude with the arthritis. I haven’t read on here that anything seems to work for very long. I just keep praying that if I keep looking that someone will find a solution tomorrow. I haven’t been through all the meds for PsA yet, but I am still taking it one day at a time for now.

Hand in there and tell yourself tomorrow it will be better.

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Nope, not telling you to suck it up. This is the dreaded gap at its worst: try a new drug, wait three months (suffering) to discover it’s a non-starter. Repeat. And repeat. Pretty well everyone has a gap of several months, except for the odd person who gets put on a biologic immediately and who responds quickly. That’s like winning the lottery! No, Pooh my friend, you may have had “suck it up” hints before, but I think we’re way past that. What you are enduring is just plain rotten and I’m sorry you are going through this.

Well looking at the bright side, you’re still making progress: you’re a step closer to treatment that will probably work. And not being on methotrexate, you can at least pop a cork without having an anxiety attack. But that doesn’t make things better for you today, does it?

Can you get the dexa scan moved up or done privately? I’m assuming the scan is to help decide whether the steroids were a factor in your fractures. I had a quick google, and it looks like a private scan would cost you about 65 GBP. That might be your express ticket to a welcome shot in the bum to keep you going for a bit longer.

How about short term leave from work? No, that’s a stupid idea: you’d just be bored at home with the dog. And boredom and pain don’t mix well.

How about renting a mobility scooter so that, at the very least, you can take the dog 'round the block? One of you will be happy anyway! I remember being in Florida when I was in a state similar to yours and I was miserable. My poor husband. I had resisted the idea of a scooter for various reasons, mostly pride and parsimony. Then one day the dog was whining, you know the way they do when they want a walk, and I thought “Dammit, I’m going to buy one of those things if only to be able to take the dog for a spin.” And the next day I did, figuring that I could always sell it in the unlikely event of my becoming mobile again. That was the decision that facilitated a bit of freedom for me: I could shop, go for walks, and have a measure of freedom again. The dog loved it, and I coped much better with my pain and limited mobility because my mental health improved a bit.

Getting the scooter also saved some of what little energy I had, and it facilitated finding a bit of distraction for my stuck-in-a-rut brain. I could shop without feeling desperate about pain and fatigue. The dog got extra walkees, and I got to talk to people we met. I got fresh air and scenery. Did I like tooling around on a mobility scooter? No, and I still don’t. But I loved what it allowed me to do. And it did make that horrible time a bit less horrible.

Think about it. If I lived in the UK, I’d get one like this. Or if you’re more like I am most of the time (that is to say, um … frugal) I’d be looking for a used set of wheels. I think @Jules_G knows of a place to get them.

Pooh, I’m really sorry about what you are going through, and you’ve gone through so much already. You know I understand what it’s like to be where you are now, as do plenty of others here. Yes, it stinks. But you’ve got to find the few things that you can do that may help (even if they only help a bit) and just do them. And lean on us, of course. That’s always free.

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Hey Poo, I’m sorry it’s going so badly for you! It really isn’t fair, but then…well, you know that old expression. But, still it’s NOT FAIR!
I remember how desperate I felt before I started Enbrel. I got really impatient and wanted things to get better fast. But I also had a crazy fear of meds–biologics, etc. That was bazaar! Glad I pushed past my fear!
I think you’re ready for a biologic, and I do hope you get quick results when you start it so you can put this nightmare behind you!
It is a disappointment to be in poor health at such a young age–at any age, really. I look at healthy people with so much envy! Drives me nuts I’m not like my parents were when they were my age…my mom is finally slowing down now that she’s in her 90s! Then I remind myself that I’m not alone; there are millions of other people suffering–like you and others here–and people all over suffering, and millions of them suffering much, much more than me. I’m in a better place than you right now as far as pain because Enbrel is working for my PsA, so all I can tell you is hang in there–you have lots of years left to go on with your career and other fun things you had always looked forward to. You might not ever have the perfect health you had expected going into your old age, but it can be a lot better than it is now. :slightly_smiling_face:

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Don’t suck it up! It’s really hard for you at the moment and the gap is just terrible. I had so many gaps I tried to suck up and soldier through. Sometimes it worked but the last few gaps werevthe worst. sounds to me that ‘suck it up buttercup’ is insufficient for your current situation. I know steriods are problematic as we have all previously mentioned but I personally am not sure I would have got through the last 6 months without them. By that i mean i worked out what was important in my life and what I could reduce or discard. Then I worked out a minimum drug regime that supported me doing that…steriods were part of that regime. The side effects did not out weigh the benefit…which was keep enough in my life so that I felt I was more than my disease but accomodate the needs of the disease too. I cannot advise you whether to take steriods. We know different drugs affect people differently. But for me steriods were far less of a problem then any DMARD and I had them all. Weight gain was the biggest problem and coming off them but it was worth every single kilo. Good luck whatever you decide. Remember buttercups need nutrients not cement.

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I think ‘November’ is an issue. I’d see it as an issue. 6 months plus is a long time to try sulfasalazine which for many of us is as much use as a chocolate teapot. Okay, we’ve both lucked out with our rheumy, but the clinic is very busy and, despite the level of expertise we benefit from, subject to the same pressures as other extremely busy rheumy departments. I’ll frankly admit I’m missing my old rheumy in Shropshire who certainly didn’t let the grass grow under his feet. I don’t know whether the speed at which things were expedited was down to him, to a quieter department or what but I was very lucky to find such a place to haul me out of the gap pronto.

For me, waiting is no longer the issue it was. I’m on treatment that works and I accept that I’ll probably need rheumatology services for the rest of my life. All other things being equal, I’m okay with taking my place in the queue. However in your shoes I’d be pressing for an earlier appointment and an earlier Dexa scan. I think requesting both things is entirely justified. The old ‘squeaky door gets the most oil’ saying applies. From what you say the wait ing is affecting your mental health and our rheumy needs to know that. If biologics are the next step then there will be a bit more waiting attached to that while they’re approved so the sooner the better. I know you said it’s diffcult to get an earlier appointment but sometimes we knock once, we knock twice … the door remains closed, we knock again and it opens. A letter required maybe?

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Thanks all of you. I felt better going to bed last night having expressed my tantrum and consequently slept well for a change. That always makes a difference. And so today I have more energy and that’s certainly a positive. And the sun is shining and Alan cut my grass last night and it looks beautiful this morning. So onward…

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Yep, the gap, usually several consecutive gaps in and between each treatment truly stinks. The pain, fatigue and general hopeless miserableness all takes its toll for sure. There is no magic wand in the hand of a medical “Harry Potter” which can take it all away in an instant. The only way out is through! It’s a difficult and cr@p time, I lost my business to this damn disease and that still hurts emotionally, it hurts alot. Being a patient patient is tough but the time is going to pass anyway, when you can’t control the schedule take control of your thought patterns around it.

What I do see for you, Poo, is that when your next rheumy appointment arrives you have “failed” two DMARDS (mtx and ssz) and this puts you in line for a biologic as your next step. And you know this is where your rheumy is heading, don’t you? You know this without any doubt. Just hang in there.

On the mobility and capacity front, there are lots of things which can make every day living a little easier. Have you asked for an occupational health referral? Do you have a Lloyd’s Pharmacy near you? Check out their website as many of their larger shops have an assisted living section full of things you never knew existed but, boy, can you make good use of them. And when you feel better you box them up and put them away in a cupboard, your spare room or shed.

Now scooters. Yes, I’m lucky that there is a weekly market near me with a stall that sells reconditioned second hand scooters but GumTree and eBay are good too. They sell them in Lloyd’s and if you look in the Yellow Pages/Yell.com etc you will likely find several mobility shops close to you so even if you have no intention of buying “new” you can visit and try a few out to see what feels right.

Every time I think “this is it” for needing a mobility scooter things turn around. I am in this crazy situation that although I have some joint damage in my feet (and two “pet” bone spurs) rubbish knees and hip pain, what cripples me, literally, is the pain from the psoriasis I get on the soles of my feet … can’t stand or walk. I’m in a good phase at the moment but I’ve done all the pride stuff and got over what other people might think (their problem not mine!) and I’m ready to press the buy button whenever the moment arrives. So what if I need to use it for my afternoon walk for a few weeks and then, miraculously, the neighbours see me walking down the road unaided. This is the nature of my PsA.

I’m betting as well that you’d feel clearer headed if you could get a good nights sleep, right? Have you talked about this with your GP and/or rheumy? I know your fracture is agony and this suggestion likely just won’t cut it at the moment but lots of us here, me included, take a small 10mg or 20mg dose of amitryptiline at night. It helps me to get to sleep and if I do wake with pain it helps me nod back off again. It’s no miracle worker but every little bit helps.

Hang in there Poo, there will come a time that you’ll look back on this period and know how much things have improved. And I hope when that time comes we can sync our West Country trips (@Sybil too) and paint the town red.

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I hear you Sybil. More is happening though as I think I said. I went for physio for my fractures. She’s concerned about my spine. So she emailed Dr Ellie last Monday evening. Dr Ellie replied via her secretary on Wednesday agreeing I need a full spinal MRI. I finally saw a GP on Friday armed with the email exchange to get that going. And Dr Ellie’s formal letter to my GP arrived yesterday. I can’t fault her efficiency. It’s outrageously fabulous. However both in July at my consultation and in mid August when I phoned the helpline, I was told I had to wait to see if the sulfasalazine did anything, a mimium of 6 months. But of course in the meantime there’s always steroids and the stupid protocol doesn’t allow for anything else, given from its point of view I’m not bad enough yet. God knows what being ‘bad enough’ is though, I simply can’t imagine how awful that is.

And given my fractures I am concerned about going back on steroids, despite having a cupboard full of them too. Dr Ellie said a short 8 day course probably wouldn’t make me worse (bone density wise) and since we’re off to the Lake District in mid September I thought I’d go back on them then just for that.

But I wasn’t aware the Dexa scan was so cheap thanks @Seenie. So I’ll investigate that on Tuesday. And who knows maybe I’ll be able to get that done next week as once I know what that says I can hopefully just go back on steroids anyway which I know bounces me straight back to almost full capacity in a couple of days and that would be so nice. Just so nice.

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Thank Jules. Loads of suggestions and I am truly doing so much better emotionally at least this morning. That certainly makes a difference.

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The protocol is 12 weeks trial, though … I still reckon you’ve got some wriggle room if it all gets too much. But like you say, a good night’s sleep, a sunny day and getting it all out of your system can be all we need to keep on keeping on!

Jules is right of course, you’re on your way. Not knocking Dr Ellie but systems kind of interest me when they’re not driving me bonkers! And there are certainly some interesting systems in our little island to keep me busy!

Lake District in September sounds wonderful. For some reason I have a real yen to go there recently. When my kids were tiddlers I did a little road trip with two of them from Southampton to Scotland that included staying in youth hostels in the Lake District. I don’t remember many holidays in such detail, it was dreamy. The best fish & chips ever.

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I’m really looking forward to the Lake District. I don’t know it well but Alan does. And even though I won’t be able to walk as much as I would like to, it will be lovely just being somewhere different. We’ve hired a cottage which looks fabulous at the bottom of Blencatha (spelling?) and two pubs are in baby walking distance.

And whatever I’ll be on a short course of steroids so will also feel so much better anyhow!

Interestingly I didn’t know the protocol was only 12 weeks. I always thought it was 6 months. Don’t why either it was what the first rheumy told me. Glad I know that now as if needs be I will push. Thank you.:smiley:

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You’re set. All set. :wine_glass::relaxed:

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As an update and as another classic example of how much this disease changes sometimes from day to day. I managed to walk around a mile on Monday evening - the longest since mid June and managed to have a blast yesterday poodling around on some steam trains I tacked on some holiday to our long bank holiday weekend. And tomorrow I’m going to give commuting into work a go. A short day but it will be good to see how it goes and to actually see some work colleagues who I also haven’t seen since mid June. Fractures seem to have done some of leap of healing at long last. And the rest of me seems a lot more manageable as a result. What a difference in 4 short days…

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Wow, Poo! It is amazing, isn’t it? I’m really glad for you. Now take it easy and steady, and look forward to your well-deserved and much-needed hols.

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Thanks Seenie - it’s given me back some confidence and that has helped lots. And of course the sulfasalazine might be deciding to actually ‘do’ something too. We’ll wait and see. only planning to go into the office one day a week presently and spend the rest of the time working at home. And we’ll see what I’m like after the holiday.

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Hello Poo,

I am so, so sorry to hear that you are going through a rough time. As well as having PsA, I am also a chronic back pain sufferer, so I have some idea of your pain.

When you’re down and having back pain (as well as joint pain), everything can feel like rubbish and nothing seems to go right. I have had many rubbish and nothing can go right days. Taking one day at a time is absolutely fine. I don’t plan anymore, I just remind family and friends that I will do my best on the day and if that’s not good enough for them, then tough. I am not being mean, I’m just learning to take care of myself.

On a more practical level, I find walking reduces my pain. If you can walk around the house or even manage to walk to the end of your street, that’s far better than sitting or lying. The latter two causes me to stiffen up and makes the back spasms worse. Diazepam works for me in the short term, along with lots of pain meds. If you haven’t tried diazepam have a word with your GP.

I wish you all the best during these times. Take care of yourself, put you first until you have recovered from these acute phases.

With best wishes,

Nicole2017

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Thanks Nicole - I am thankfully doing an awful lot better now. I guess I was in the darkest time just before ‘dawn’ as once I had expressed all this I slept better for starters and then seemed to feel better day by day. Chronic back pain and PsA are often linked though - just a thought. And I love walking (when I can do it) it not only sorts me out physically but mentally very much too. I’ve missed it so over this summer but I am getting there just now. :slightly_smiling_face:

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Poo I am so sorry you feel crap and Ifeel your desperation
The whole waiting for biologics is I believe is the closest thing to being tortured !
If it was me I’d go back on a decent dose of steroids to try and decrease the inflammation & break the pain cycle
Hopefully you will get some rest and this will also help your mental health as well
After all you can only put up with so much before you break
I am thinking of you and sending you my empathy and positive thoughts kindest regards

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Poo, I’m really glad things have taken a turn for the better - I so hope you have a wonderful holiday, and that it keeps getting better - even if two steps forward and one back :grinning:.

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