Gripe for the sake of it.

Maturecheese

I gotta take my hat off to the ladies on this forum. All of the ailments and misfortunes that are endured in such a stoic fashion that kind of makes my circumstances seem trivial, yet here I am griping about it :oops:

My condition has definitely spread to my wrists and fingers now (as well) which is frustrating as I am normally actively doing something. Currently trying to decorate the kitchen with skirting boards to sand but can't get down low enough to do them so will have to try replacing them. Changed the oil in my car the other day and what a palava that was and I paid for it for days after. I can't even play golf for exercise at the moment so I'm not getting any.

Anyway it's decision time regarding Etanercept in 5 days time so I can't wait (no really I can, don't want to go there) I'm hoping there is another option.

stickywicket

Gripe away, MC. We all do it. It's a great, safe griping hole.

OK we can all be stoical too but they are not mutually exclusive. There is a time for all and, besides, many of us have had far more years than you to practise stoicism and to realise that not everything is as bad as it's painted and to modify our lives so that we retain the best bits while jettisoning the worst. Besides, I believe it's a medical fact that blokes have more pain receptors than women so we have a built-in advantage

So, decision time coming up. Frankly, I think I know what you'll do. You're struggling a lot right now and the less we can do the more time we have to fret about it all. Of course, you might find the rheumatologist is happy with your blood results, thinks the disease is under control and it's just about pain relief. You might. You might not.

Personally, I'd go for etanercept if given the choice. It doesn't have to be a lifetime choice. You can always change your mind. It might - worst case scenario - do something nasty to you but, there again, so will the arthritis. Good luck though whichever way you jump. These decisions are never easy. In my younger days docs just gave you meds and you took them. No scary leaflets at all. I wouldn't like to go back to that but it was a method that certainly had its advantages in some ways.

Airwave!

Hi,
Just remember that there is life beyond arther, we must not let it define our lives.

Keep smiling.

Maturecheese

Sticky, I like the 'men have more pain receptors than women' thing. Now I can demand sympathy from my wife I will just take next Monday as it comes and see where I end up. Like you said a bit of luck and todays bloods will show a lowering of my inflammation levels and I won't have to decide but I doubt if that's the case as I feel pretty inflamed. Thanks for the kind reply anyway and to any other that do so.

dreamdaisy

Women are used to getting on despite pain, we're built for it. There's all that nonsense of periods, growing humans, expelling them then caring for them yet meals still have to provided, shopping done, houses cleaned, laundry covered etc. regardless of whether we feel like doing it or not. Then comes the all-too-common disparagament of the males in our lives as they succumb to apparently next-to-nothing, swooning like Victorian maidens expiring with consumption. Yes ladies, men feel pain etc. more acutely than us so get over it, we are not superior or better, they are not inferior or unable, we're different but complementary in our strengths and weaknesses.

Of course this is all a great generalisation, there are women who cannot bear any pain at all and men who can be at death's door and feel nothing (my husband had a dead and gangrenous appendix inside him and was in great danger but in no pain whatsoever, go figure). Whatever it is, wherever it is and no matter how small it is, pain is pain. It's a warning signal which can be turned off in many circumstances but arthritis ain't one of those. You either learn to live with it, pace yourself and get on or you give in (which many do and shoud not be criticised).

Personally I find those who don't let pain rule their lives far better and more interesting company than those who do but we all have our off-days. Moaning doesn't achieve anything for me, it is what it is and it will do what it will do but I am blessed in that I have never known good health. It must be so much harder for those who have as they have no grounding for the day-to-day relentlessness of not feeling able to do things but they have to be done. DD

Maturecheese

Update:

Well I went to my appointment and managed to avoid anti TNF for now. They are starting me on Hydroxychloroquine to combat my malaria (not really ) I made it plain I wasn't really happy taking Etanercept and so I have a 4 month reprieve taking another DMARD instead (Triple Therapy - Methotrexate,Sulfasalazine and Hydroxychloroquine)). I am hoping this will work otherwise I'll have run out of choices.
On a slightly happier note they have allowed me to take steroids for 3 weeks 2 weeks of 10mg and 1 of 5mg although as I already have some in the house I have cheated and taken 15mg day one,13mg day two, and will take 11mg tomorrow then 10 from then on.
Fingers crossed.

daffy2

(Triple Therapy - Methotrexate,Sulfasalazine and Hydroxychloroquine)). I am hoping this will work otherwise

DD had her own take on this - who else remembers Tripe Therapy?

dreamdaisy

That was one of my better typos!

I hope the triple is effective in bringing things under control, please let us know how you get on. DD

Maturecheese

Can anyone post a link on DD's views on Triple Therapy. I am a pessimist anyway so I'm not expecting it to work and I'll let you know either way.

dreamdaisy

Put tripe therapy into the search engine and the original thread might pop up.
I think it started because someonee posted their concern about adding another med to their mix so that they were taking three, possibly worried they were unusual in this. I replied that triple therapy was nothing unusual as many had been doing it for years. I however mistyped triple as tripe.

My views? No harm in trying but don't expect miracles. In my experience It will not remove the pain, will not repair any joint damage no matter how little that might be but it might help bring things under better control to slow the progression and to prevent further joint damage. You will also have three meds to stop if you fall ill. In my case I couldn't start the big guns until I had failed on three DMARDs, which of course took years. Luckily things are improved on that front thanks to the trailblazing done by us who went through that and are paying the physical cost. DD

stickywicket

I take hydroxy along with meth and it's a combination that works well for me. Others, like you, need a third string to their DMARD bow. You are by no means alone and I hope it does the trick for you.

Please be careful with the steroids. See my thread 'Prednisolone alert' It's not good when it all goes wrong.

Tripe therapy was a good thread which provided many people with a lot of laughs, just because of a simple typo. Here it is. Have fun.

viewtopic.php?f=8&t=43606&hilit=miracul ... pe+therapy

Maturecheese

Well thanks once again for all the replies and advice. I thought that when on anti TNF you still had to stay on methotrexate. As for the steroids, the state of my right knee right now I need them as they don't want to aspirate it due to the risk of infection, anyway that's what the nurse said. I'm not sue whether there is fluid on it or it's tissue swelling. My concern is when I stop in 3 weeks time I'll be right back to square one with the knee and the pain.

Anyhoo I reckon I'll be one the dreaded anti TMF soon enough cause I have no faith in the 'Tripe' Therapy working.

dreamdaisy

I had one DMARD with one anti TNF, two with the rest. Steroids are the only thing that made me feel something approaching normal so of course they're off the drugs menu: feeling better in myself is nowhere near as important as having thicker bones, heart muscles and stronger lungs (which I dose daily with oral steroids but at a pathetically feeble dose arthritis-wise).

This supposedly strong woman sat in bed and cried this morning as a terrific wave of pain washed over her. I have pulled myself together though (it's not as though it was anything new or unexpected and is guaranteed to happen again), and gave myself a talking to (it's mind over matter, Daisy, you do mind but that doesn't matter). I got up, showered, dressed and despite not raring to go I have at least three spoons left in the energy drawer and will make the most of them. I shall waste one making a cup of tea. DD

Maturecheese

Sorry to hear about your bad day DD. There are days I am depressed as hell and i am new to this but in the end we just have to suck it up as they say. You're right about low dose pred, I reckon anything under 15mg isn't really worth it, (He says after being prescribed 10 mg for the next two weeks, then 5mg for a week)

I gotta figure out next how to fit in the Hydroxychloroquine (morning and night) as It can't be taken within 4 hours of Omeprazole. I take the Omeprazole first thing in the morning before anything else. I will ring the helpline and discuss it with them

dreamdaisy

EVERYTHING under 15mgs is worth it, that's why I miss the little blighters so much! I have an out-of-date pack of 5s, 2s and 1s in my top drawer, I taunt myself with them because walking away makes me feel so good - not as good as them but the metaphorical salute of the English archer is not a bar substitute. I took a year to withdraw but I had been on them for three and knew it would be hard. TBH it wasn't because I have myself so long. Towards the end taking them became a nuisance.

Timings can be tricky, especially if one sleeps through the night. I've been known to take tabs anywhere between 3 and 5 am if the timings of others depended on the first one. (Once I was off the steroid I was able to drop the bone protector med so that was an end to that malarkey.) I know from reading on here that hydroxy carries the risk of affecting one's eyesight so ensure you have regular eye tests whilst taking it.

Depression affects me (it's having a go at the moment as things are especially rough) but I take a low daily dose of an anti-depressant and have done for years. Feeling down does one no harm as long as it does not become the norm: I will not allow the disease to do that to me. I halved the dose (with medical approval) back in the summer so maybe it's time to up it again (with medical approval, there's no other way). DD

Maturecheese

Well I can honestly say that the pred I'm on at the moment (10mg) isn't enough to combat my knee so what it's going to be like in a couple of weeks when I'm back off them I shudder to think.

I have tried anti depressants a few times over the years but I just don't like them (or trust them) so now I refuse to go there. The wife's been on them for years (what does that say about me ) so obviously they work for her. I'm used to negativity so if I go through period of feeling more down than usual I just live with it. Obviously that is going to be more often now but thems the breaks although I have no doubt never experienced really bad depression, thankfully. The thing that really gets me peed off at the moment is the inability to exercise knowing that inflammation is bad for my heart but unable to do a thing about it. If I could cut out the three **** a day (evening) it would help but that's eluding me at the moment due to lifes stresses. We have to be able to unwind at night somehow.

Anyway I hopefully should be hearing from the Rhuemey nurse today to clear up dosage timings and I suppose I'd better mention my knee not co operating

stickywicket

Re the hydroxy / omep - I've taken both for years, the omep on waking (It's there at the side of the bed along with water) and everything else, including hydroxy, after I've showered, dressed and had breakfast. I think I'm right in saying that the reason for te gap is because the omep lessens the impact of several other meds. I work on the basis that one can only do what one can do but I'd advise you to ask your local pharmacist how important the gap is.

I know you worry about exercising but maybe that's because you started off doing far more than most. I've had RA for around 56 years and my heart is fine. BUT I've always done what I could in the exercise line - walking, riding (horses), and plain, boring exercises often sitting down ones. The exercise(s) we need can be excruciatingly boring but they do work.

More bad news :oops: - smoking doesn't relieve stress: it causes it and can also cause RA and make it worse.

https://tinyurl.com/yazytt9r

https://tinyurl.com/y8bl5j5m

It sucks, I know but I work on the principle that facts do help however unpalatable.

Maturecheese

Sticky - You are right of course I do need to quit smoking, whether I will be able to is another matter. As for the Hydroxychlooquine, I'll seek advice as a 4 hour gap is a nuisance.