My friends father has had a terrible time. Had a PET CT and they never got back to him. A month later had blood clots in one leg and ruptured aortic aneurysm. Operated on in the night. Then a month later was in hospital again with diverticulitis and kidney issues.
They put him on methotrexate and aspirin alongside pred - 25mg? - but now has pain in the other leg and is dragging it (dropped foot?) plus pins and needles.
They have just changed his methotrexate to cyclophosphamide - I have not read anyone on here that has been prescribed this.
Feel for them as they have zero experience of anyone ever being ill and it is a lot.
They are seeing the surgeon this week, 2 months after the op, and I am saying that they need to go with a list of things they need to ask. Clearly the other leg is a worry.
He is losing weight and getting very depressed - amitriptyline clearly not doing anything.
Anything else anyone can suggest that I tell them to ask at their appointment?
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A medical professional suggested that I never wait to be contacted about a test result, after a suitable time.. My husband had had a prostate biopsy and we hadn't heard anything. She said always call and we did; it was cancer. We got it early - cured 30 years ago.
Doctors are human, people forget, papers get misplaced. any number of reasons for delays in getting reports. My hospital has a patient portal where I see my results, sometimes the same day. I can message my doctor, sent a photo of a problem and learn what tests are for.
I thought I replied to this but it seems to have disappeared...Yes, you're right about this, and I did stress that they have to be the advocate for his health. Great news re your husband. Something if caught early enough has a great outcome.
Oh that’s awful. I assume it was GCA/LVV. Are they in the UK? Why were they not offered Tocilizumab? It is widely used and has lots of positive data and good track record. I couldn’t find big data on the efficacy of Cyclo and what I did see said that it is used when all else has failed. Perhaps PMRpro has something to say here.
Yes they are in the UK and was diagnosed with LVV I think. They seemed to put him on Methotrexate from the very beginning off the back of the operation. I'm assume no TCZ due to his diverticulitis?
I feel for them as they are still in shock and as I say have never dealt with medics before. They can't understand why he wants to nap and feels to ill to do his leg exercises! He had a major operation where the surgeon said he would 'try' and save him.
I did try to tell her they need to re-educate themselves as this is not going to go away any time soon.
"They can't understand why he wants to nap and feels to ill to do his leg exercises! He had a major operation where the surgeon said he would 'try' and save him."
Well exactly... I did emphasis that.. a lotI told them to make sure he does rest every day and not to overface him with the exercises. If they're 20 minutes then just do 5 and maybe try another 5 later in the day.
If you've never been around illness I guess it's hard to understand. I have another friend who's partner has just had his leg amputated (diabetic) and she's furious with him.
The amputee? Think they've been together for 25 years...Don't know who does the food actually.
I think she angry as he didn't look after himself and had now paid a very heavy price. From what she understood his other leg is in a poor state too! 😱
I think re the amputee, she did as much as she could, but he didn't necessarily do what he should have been doing. I get that completely. You can only go so far
Maybe they should watch "Surgeons:A Matter of Life and Death" on ch5. Last week's episode had a woman having an aortic aneurism op. I hadn't realised how big an operation it was. They had to stop her heart and circulation.
Hers was a particularly complex one but even a "plain" one is Big and requires bypass which is always a fingers crossed performance especially in the older patient where the heart might refuse to get going again.
Do you have Netflix. There's a really interesting one on there where a doctor puts unfathomable cases in The New York Times and members of the public respond with similar symptoms and potential diagnosis. All bar one was successful.
No - never fancied it. Particularly taken by forensics really, It is really interesting watching programmes from a long time span and seeing how it has developed and the process can be similar to working out what a disease is. And emergency medicine is nicely gory too ...
We did Royal Institution Christmas Lecture with Sue Black (Baroness Black of Strome) who is a Scottish forensic anthropologist, anatomist and academic. She was pretty impressive
I was prescribed 6 pulses of cyclophosphamide after my GCA-LVV had caused me to have multiple acute strokes, ten days after I started on pred. It wasn't intended as a steroid sparer, as such, but to reduce the risk of the inflammation causing further strokes, which the consultants thought was very high: they wouldn't let me leave hospital until I'd started.
Hi - not sure how relevant this might be - doagnosed with vasculitis and GCA, PMR and fibromyalgia- nothing worked so i did 6 cycles of monthly infusions of cyclophosphamide. Felt awful - like on chemo - but afterwards there was a difference and i trundle forwards creaking with a lot of things, but it did make some difference definitely. Good luck xx
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CBD oil as a steroid sparer
Anyone tried Cyclophosphamide?
