I’m new on here but wanted some advise for my dad who was diagnosed 3 years ago now with Lupus. His quality of life is awful; he has one good day then a few bad ones which seems to be the sequence of things. His hands swell up and he is in such pain with his joints that when this occurs, he gets no sleep.
He had a stroke 4 years ago which he has recovered well from but there is always the fear that he’ll have another one.
He is now worried that his one of his eyes the vision is a bit flaky and at the moment his white blood cells are low which he is seeing his gp about on Monday.
He can’t exercise as he is to weak and can’t sit in the sun as any exposure brings on a flare.
Is there anyone that can give advise for his hands swelling and joint pains other than painkillers? Have tried wheat bag heat.
Thank you for listening.
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LouBLou13
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I am Rosh I am a male sufferer of Lupus. I have had Lupus since childhood. If you need more advice do not hesitate to share you concerns on this page if you google Lupus org Uk and click on St Tomas home page and patient story and my name is Roshan you would find my life with Lupus and it is not all doom and gloom.
That sounds miserable. Do you think your father is on the appropriate level of regular meds - maybe he needs to increase some of the immune-suppressants? It does sound like he needs a more general review than just painkillers? Let us know how the meeting with the GP goes x
Hi Whisperit, no I don’t think his meds are quite right but each rhematologist visit when he reviews things, there never seems to beany changes that make a difference. I am starting to lose faith and maybe think as he is elderly(he hates me referring to him as elderly!) that they are not so concerned. Hopefully the gp will have some answers on Monday but I dont hold out much hope.
Oh I can empathise with you on this. My father worked his socks off as a Cardiologist (then GP) for the NHS and then was a clinic volunteer after he retired.
When he retired properly, RA moved in and launched the first of many vicious attacks. Not only has it taken his mobility but also the majority of his sight - he has iritis, corneal ulceration and plugs for the SS. Despite all this, he volunteered for the CAB three times a week - travelling the 40 mile round trip by bus as his sight is too poor to drive.
In 2016, as he got off the bus near his home, a car drove into the back of his legs and flipped him up and over the roof. He was concussed and sore but needed to be discharged from the hospital as his beloved dog was very ill and needed to be euthanised 😪 As time passed, his calves kept hurting. He presented to his GP after 2 weeks and requested an X-ray but this was refused. 2 weeks later he returned and surprise surprise, 2 broken legs . . . By this time, he was a battered and broken shadow of his former self, only able to shuffle with the help of a stick.
Surely nothing else could go wrong? Oh, didn't I mention the advanced bowel cancer they discovered when his GP finally agreed to a colonoscopy? Anyway, keyhole surgery removed the primary and tablet chemo seems to have chased off any secondaries and perhaps the worst of the RA which had worsened during the stress of the cancer and the court case against the car driver.
Now, he's quite weak and has lost any drive that he once had. His life now consists of watching television punctuated by frequent naps in bed - he's lost all his get up and go. He is having hydrotherapy and finding it very helpful but they had to push hard for it.
What treatment is your dad having? My father did well with sulfasalazine and arcoxia. He refused dmards but I guess the chemo had the same effect. Your poor dad, it's a rotten hand to be dealt when all they want is to enjoy retirement. Xx
Sorry sorry to hear about your poor dad clareb6. I was the nkfirst ng hydrotherapy for my dad too as he needs to try something to give him back some strength to be able to walk properly again. Goid to hear that its helpful for your dad. My dad isnt having any treatment only lots of different drugs. Rheumatologist just puts up the steroid dosage every so often but as soon as he reduces it, he goes downhill. There is just no quality of life 😞
I find a good quality turmeric supplements is the best thing for joint pain/swelling & have several family members with other autoimmune conditions that find it helpful too
Has your dad had a discussion with his consultant about his current quality of life and difficulty in managing symptoms? Could it be that a change in his treatment regimen may help a bit?
I understand that if he is weak it will be difficult to exercise, but perhaps he could request a referral to physiotherapy to help with this? If he doesn't exercise he will continue to get weaker. We have a blog article about lupus and exercise which might be of interest - lupusuk.org.uk/lupus-and-ex...
We also have a blog article about pain management which has a lot of information and advice which might be helpful - lupusuk.org.uk/pain-managem...
Thank you for your reply. That all sounds very useful. The last time I was with him at his consultants appointment, I did mention his lack in quality of life and he didn't say much at all and just upped his steriods. I will make sure it is mentioned again at his appointment next week though.
I will pass on your reply to my dad as he will be interested to read those articles.
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