Getting help from Rheumatology Team?

[strongmouse]

My husband has RA and is on Tocilizumab. However he picked up hepatitis E while still on methotrexate, then was changed to biologics as the methotrexate wasn't sufficiently controlling the RA. Since then his ALT has gone up and he had a liver biopsy showing Non alcoholic fatty liver. They have cut the dose to half of the tocilizumab as long as his ALT is blow 120. However his RA is getting worse and not controlled.

He is seeing a physiotherapist as he has a lot of pain in his hands and has developed nodes on the tendons (Trigger Finger) at the base of several fingers which are becoming more locked. He has left a telephone message about having a steroid injection at the base of the thumb as this is impairing the use of his hands too. He can't take NSAIDs for pain nor codeine. He has had a phone call from an admin person, not been able to speak to nurse, who has said he has an appointment with the nurse at the end of the month. He feels very frustrated as no-one seems to be taking him seriously or talking to him from the Rheumatology department.

Any ideas? I have suggested making a complaint but he doesn't think it will help.

[wilbertjellyfish]

It's very frustrating. My rheumy nurses are great but it's hard to get an appointment. If he's struggling then he needs to keep trying. However, some days all your fight is used up trying to live and there is little left to fight for an appointment.

[strongmouse in reply to wilbertjellyfish]

yes, that is exactly the problem! It is exhausting when you are feeling more fatigued, in pain and keep getting no further forward.

[welsh12]

Perhaps his gp can help worth try

[Spanelmad in reply to welsh12]

That's a good idea my gp will do joint injections so it's worth asking.I find it's easier to get it done this way.Good luck

[strongmouse in reply to Spanelmad]

Thanks. He had a GP he didn't get on with for a while, but fortunately our surgery has several GPs and he has found one he feels comfortable talking to. I will suggest he makes an appointment to see if they might do this.

Because he has infusions he goes to the hospital every four weeks for the infusion and also for the blood test the week before. Parking is a nightmare and the GP is local and easy.

[wilbertjellyfish in reply to strongmouse]

I'm on these infusions also. I only need the bloods every three months, I've now had my third infusion. In our hospital the rheumatology nurses share a floor with the infusion unit so it might be worth asking to see them when he's next in.

[strongmouse in reply to wilbertjellyfish]

Thanks, a good thought, but my husband has tried that with mixed results. The last time the staff phoned the department but no-one came to see him. He could have waited around for another four hours and someone 'might' be able to fit him in.....

[wilbertjellyfish in reply to strongmouse]

Oh, I know. It's all very frustrating

[bpeal1]

Try contacting the Rheumatology consultants secretary. If that doesn’t work then contact PALS.

[WilfDog]

Hi Strongmouse. I totally understand your frustration. You just need somebody to listen and be proactive to sort your husband out. I would suggest, like others have, to ring your GP and rheumatologist secretary and firmly say that you can't cope and need an appointment with the consultant now.

Daily exercise is the key to keeping going so it is good that he has an appointment with the physio. Have you looked at complementary therapies like potent supplements? I gained some improvement with my sJIA after taking doterra LLV supplements. I'm still on biologics and a low 5mg maintenance dose of prednisolone but my inflammation has reduced and I've been free of the whole body flare-ups since 2017. I have extensive damage, unfortunately, but I'm hoping the improvement in the inflammation continues. I still experience inflammation in my back with the AS, but I've certainly improved. I don't eat meat, and have lots of veg in my diet, as well as doing a regular exercise routine and walking. I asked my consultant about the supplements and she was fully onboard with them, so I have taken them ever since, along with the oils which are food and therapeutic grade. I wouldn't take them without the OK from my consultant. It's not for everyone, but I can't live without them now. I thought it was worth mentioning.

Unfortunately, since Covid, the services we once had are far more difficult to navigate to get help. Keep ringing and don't give up. I know this is exhausting, but it is the only way, sadly. Good luck. xx

[stbernhard]

Hi strongmouse, have you considered contacting the NRAS help line 0800 298 7650 to have a chat with someone? I'm quite sure they could be of help. They are very kind, understanding and knowledgeable.

I found it a blessing talking to them. I hope you and your husband find a good way forward.

[strongmouse in reply to stbernhard]

Thank you for your kind thoughts. We did speak to someone on the NRAS helpline and although they were kind and sympathetic, they couldn't offer us any specific help. I trained a nurse myself back in the 70s, but of course so much has changed and I have had to learn about different medications etc. We both have health problems, as you do when you get older and 'prop each other up' most of the time. 😆

[stbernhard in reply to strongmouse]

It was worth a try. It's wonderful that you prop each other up. All the best.