Dad’s story

[Milly123W]

I’m writing on behalf of my dad who was diagnosed with rheumatoid arthritis back in 1982 when he was 28. He managed his condition very well with no medication, just diet and a healthy lifestyle until things started getting worse around 12 years ago.

He was put on a medication which controlled things well until lockdown when he went over 18 months without seeing his consultant. He became very poorly and when he finally had an appointment he was told the medication he was on was no longer working and had started to attack his body. He was then prescribed methotrexate which he injects once a week. He has been on this since September 2021 and although according to the doctors this is working for him, his condition is still declining. He can no longer drive, has given up his allotment and even the simplest of tasks are a real struggle for him.

He had a knee replacement in 2022 and is awaiting surgery for his severely deformed hand joints. He has recently started with very swollen feet and bent toes so has now been referred to a specialist about this. It seems to be one thing after another for him but the main concern his lack of strength. He is only 69 and is so frail. It’s very sad to see my dad who was once such a strong, active man have such a poor quality of life.

We still hope things will improve for him and would be grateful for any advice/help.

[Hidden]

It is very hard seeing a parent you love dearly deteriorate in health whatever their age or condition. I send my sympathy to you. RA is debilitating and can affect any organ. I am in my late 70s and have had RA for 50 years since in my late 20s. It sounds as if he might now benefit from biologicals, if he fits the criteria. I recommend you make an appointment with the rheumatologist as methotrexate is clearly not keeping the RA under control. I was told early on that anyone with RA should keep their weight down to avoid strain on the joints.All meds have side effects including methotrexate. He needs reassessing by his rheumatologist.

[Milly123W in reply to Hidden]

Thank you Annie. We will speak to the rheumatologist to look into other options. He has always been a healthy weight and now seems to be very thin. He is also 6ft 3 and I think his height makes balancing etc very difficult. Hopefully they can find something to improve things for him.

[BonnieG123 in reply to Milly123W]

So sorry that your dad is so bad. I did hear that other meds added to methotrexate give more relief. You might want to ask your dad’s rheumatologist. God bless.

[medway-lady]

Is your dad on here in his own right as his story is familiar? I only ask as MTX is usually the first medication offered and it might be that it was needed to prevent damage to his joints many years ago and so now there is little to be done to reverse old damage but it might be possible to prevent more. I’m a similar age and to be frank I’m not as able as I was a few years ago simply due to the aging process which comes to us all. I think that aging is hard sometimes and throw in a debilitating untreated disease and problems are probably inevitable. I’m so sorry for him but he really needs to talk to his Rheumatlogist to see if it’s possible to try another medication or add another one in. But please also talk to his GP to see if he has something else going on as well such as kidney declining function, blood pressure issues or heart issues as it may be that his decline is not down toRA but something else entirely.

[Milly123W in reply to medway-lady]

Thank you for replying. He hasn’t been on here before. He recently broke his hip and had a short stay in hospital where they took bloods and blood pressure regularly and didn’t pick anything up but we will mention it again just in case.

We will definitely look into changing or adding to the medication. He just seems to have such a poor quality of life now, it’s very sad but this is giving us some hope that things might be able to improve for him.

[medway-lady in reply to Milly123W]

I sincerely hope he gets help because its all to easy to say to put all of our ills down to RA when the reality is that lots of other issues arise through other diseases, conditions or even just the natural aging process. X

[AgedCrone]

Are you saying your Dad was just treated by his GP,& not offered Disease Modifying Drugs or referred to a rheumatologist when he spent all that time managing his condition himself?

If you are that is really dreadful….and NRAS & Versus for example should have widespread campaigns - carefully worded - explaining how important it is…even though these days there will be a wait……that anyone testing positive for RA should ask to be referred to a rheumatologist as soon as possible. Most GPs don’t have enough knowledge to treat RA by themselves.

Does anyone accompany your Dad on his visits to whoever is treating him now? I think that might help …as most men don’t like to complain to their doctors….could you put that to him…..& telephone for an appointment with his rheumatologist.

I was diagnosed in the late 1990’s, I’m over ten years older than your Dad,& I had to push all those years ago….to see a rheumy…..when my GP told me at my age I should expect aches & pains & to take Aspirin.I now am just as capable as friends of my age.

We do have to be proactive these days….so do try to get that appointment…. & have somebody accompany him .I do know with the jnr doctor’s strikes it won’t be easy, but your Dad does need help as Mtx does seem to have been given a bit late in the day.

Good Luck..I hope you manage to get your Dad some more suitable treatment.

[Milly123W]

He was referred to a rheumatologist in the 80s but he went into remission (without any medication) and didn’t need to see anybody until around 2011. He was then put on a drug (I forget the name) until 2021 which managed the issues well until after lockdown. So he hasn’t just been managing with a GP, he does have regular visits which my mum attends with him. They do try to explain how bad it is but we have said I will attend the next appointment to help explain what things are like for my dad.

I think they’ve just accepted this is how it is living with this disease but after reading online I can see people have huge struggles but are able to keep things under control and are able to lead a fairly normal life.

It’s inspiring to read you have lived with the disease for so long as are as capable as friends your age. Thank you for responding and let’s hope something can change on our next visit.

[AgedCrone in reply to Milly123W]

I,m glad you understood my meaning…we are all different & have different expectations of treatment…..but I think your Dad definitely needs a full review..both iof his condition & his medication.

I hope you manage to get things sorted.

[Gottarelax]

I'm wondering whether, given your dad's age, another condition could be at play here? If symptoms are mainly in large joints such as shoulders/hips/knees, it's possible that he has polymyalgia rheumatica which generally affects people in your dads age group. PMR is treated with a long course of prednisolone. Whether or not he has PMR, he may find that a short course of steroids could give him a boost. When I was diagnosed RA and given MTX I didn't see much improvement but I was given a 4 week course of steroids which made me feel great and when I came off the steroids I started to decline a bit but no way as bad as before I had the course.

[Numptybrain]

I’ve just recently discovered I have ra and must have had it for 30 years even though my GP did suspect it and sent me to rheumatologist, I kept getting no because very rare would it show in my bloods until just over a year ago when it started attacking my lungs and my respiratory consultant suspected autoimmune, another rheumatologist got involved and he’s on the ball he has diagnosed seronegative ra which sjogrens and another CTD I have already had my spine operated on and it’s in terrible condition which means I can’t stand or walk for long and my joints are very bad. I’ve also been diagnosed with sleep apnea so I’m constantly tired. It could be worth checking with your dad for sleep apnea, I stop breathing during my sleep. I’m 62 now my fingers are bent but as I say it’s my spine that’s affected most and I have curvature.

Take care

Wendy xx