My dad has had unexplained back pain, then frozen shoulder, tendon pain, poor range of motion on numerous joints, stiffness, fatigue and brain fog etc etc - you all know the drill, starting when he was 27.
He embarked on a long journey to try to find out what it was, and 30 years later, still had a tentative dx of fibromyalgia, and another of “something inflammatory”. By that stage he had given up, and simply didn’t bother filling the MTX presciption.
I can understand how difficult it must have been. He hasn’t been able to pick me up as a child for as long as I can remember. He never got to play ball with his kids in the back yard.
There’s no question some of the damage is long-term permanent (he’s had that frozen shoulder for at least 15 years, and hasn’t been able to dress himself independently since then). But he certainly doesn’t have some of the very deforming peripheral types of disease either.
But he’s now showing renewed interest in treatments as I try different things.
So my question to all you veterans, who perhaps had a very long road to a dx and / or DMARDS is this - Enbrel is like a miracle to me - but would it be a misrepresentation to suggest one of the biologics might make such a significant difference to him?
I was undiagnosed for at least 30 years. I have received some benefit from both the DMARDs and the biologics. I say suggest away the possibility of improvement far outweighs the possible s/e. I would suggest to his doctor, if there is any reason he can not take it his doctor will decide. Best of luck to you both.
Thanks so much for the feedback Michael, I have refrained from suggesting anything so far (just described my own benefit), but to be honest, the effects of Enbrel are so significant that I feel more confident suggesting that there may be a treatment worth the possible SEs, even in more advanced disease.
I realize it’s not the same for everyone (and also acknowledge that as I sit here writing this, my knees, elbows, ankles, wrists, and plantar fasciitis are not totally comfortable), but it’s still literally a miracle on what was before…
I guess I’d love a few stories of those with a very long / late dx to tell dad, because I just can’t provide that comparative point.
My experience was one of those ‘hit by a truck’ type onsets, so I think it is a bit hard for him to view it as a similar illness, as he’s spent so long thinking / being told its all in his head.
I think it’s going to take a while to resovle, but any stories are helpful. Thankyou.
I'm not sure THOSE kind of stories will be as much help as you think........ he has given up much of his life to whatever disesase it ens up he has. I'm not saying he shouldn't pursue it or even anything close.
There are cochlea implants for the deaf. Whats interesting is while those who have had hearing before don't necessarily like them as the hearing is "different" by far the most common group having thee implants removed are those who never heard before.
There could be a lot of fear on your dads part one that after coming to grips with his problems that he could once again have his hopes dashed. BUT ALSO getting back a lot of what he lost and the mourning of the loss being like a fresh wound.
I would worry about function, I'd sell this thing with maybe you will have less pain...... The key in any sales presentation is to offer an "immediate benefit/value" with any long term benefits being a"bonus" or added value
Thanks Lamb, that’s exactly why I’ve been so careful - its become such a large part of his identity, and oddly enough mum’s as his carer - I’m not 100% sure that it will be significantly better on balance for both of them if he suddenly finds out there is this significant improvement he had no access to / chose not to try for 30 years.
I see your point about the pain though. It’s probably impossible to believe increased function, but the idea of decreased pain is probably much more believable, very appealing, (and with less fear associated because it won’t upset the apple cart so much in terms of ability/ carer relationships etc).
Certainly Enbrel is the only thing to consistently work for me although it needs assistance from time to time to overcome severe flares. I reckon I had PsA from teens but not severely until late 30's and diagnosed in my 50's and I'm 66 now. I reckon he would get help from it but not full relief. At least it would stop or slow down further damage and increasing pain.
