Miracle drug is working!

[Caryl]

Quite a few of you know my husband Grant has rheumatoid arthritis. He was first diagnosed over 20 years ago and has slowly, over the years, progressed through various drug regimes and combination as the disease worsened.

The past 6 months have been particularly bad and the last few weeks even more so. His hands have been so badly swollen he has been unable to clench his fingers or do fiddly work (being unable to hold small objects like screw drivers, a problem with his type of job). He has limped everywhere as the ankle and hip pain has worsened. At times he has been unable to eat much as his jaw hurt too much to chew or he could not open his mouth wide enough to get the food in.

Last visit to the rheumatologist, just after he got the plaster cast off his arm, he was told he was now eligible for another drug treatment as all the others were failing. It meant he would have to inject himself once a fortnight with a powerful drug that suppresses his immune system even further (RA is the body's immune system attacking the body), a TNF inhibitor.

Before going on this drug, he had to have blood tests to check he did not have Hep B or C, HIV, or TB and a chest X-ray to check there were no lung infections. Once they all came back clear the Dr was able to apply for special authority to give him the Adalimumab. Without this, it would cost him $1,000 per injection! With it, it is free, apart from the prescription charges of course.

We went to Nelson yesterday for him to pick up his TNF inhibitor kit (he has a special freezer pack for travel as the drug must be kept refrigerated, and special containers in which to put the used injections) and to learn how to inject himself. He has a pen-like device similar to what diabetics use. The nurse said he ought to see some improvement in about 3 weeks.

Well, Grant is a new man this morning! He woke in the early hours, as usual, but not in screaming pain but only mild discomfort. He got straight out of bed instead of having to take it slowly, sitting until he could get various body parts to bend enough to stand up and walk, and then take 10 minutes to just get his undies on. He was able to dress immediately and quickly. He can clench his fingers tightly and pick up small items. He then got his shoes and socks on immediately, and as fast as most people, instead of having to wait an hour or 2 and then take about 10 minutes to complete the task. He just about ran up and down the hall gathering gear to load into the vehicle and was able to carry it all in one go, and open the door at the same time, instead of having to make several slow trips.

He has just returned home again and showed me the swelling in his hands has reduced even further. He showed me that not only could we see his knuckles again but he could bend over and drag them along the ground! :gigl:

Unless you have lived with this disease I don't think you can appreciate how thrilled and astounded we are at how quickly and thoroughly it has started to work. Long may it continue!

To those out there with RA, we recommend this stuff, although it has only been a day so he may get hit with some side effects further down the track! Here's hoping it continues to work for many years more. :dnc1: :happy1: :happy2:

[ryanjury]

Good to hear Caryl, Grant will be very happy! I hope things continue to improve for him.

[jackp]

That's brilliant Caryl!! I have a couple of family members (in one case I should say had), who have suffered from rheumatoid arthritis and know very well how painful it can be and the restrictions it can put on life. It is a hideous thing to have to live with. Despite the fact I've never met you or your husband, reading your post has brought a smile to my face. I hope the improvement continues and consequently you and your husband are able to enjoy all the things you otherwise wouldn't.

[Sophia]

That's great.

I hope this means you'll come back to Auckland soon to see us and eat chips.

[Discusguru]

That's good news. Hope the new drug really is a miracle and rid him off all the pain and suffering :thup:

Ron

[David R]

Great stuff, thumbs up for science!!

[F15hguy]

great news, is the drug subsidised yet?

[Sophia]

I think we need to see a race of some sort between SuperGrant and BionicBackAdrienne....

8)

[Caryl]

Grant wins as he is just as good today as yesterday whereas poor Ade has to improve slowly.

To be almost pain free after many years is wonderful and he is making the most of it.

Yes it is subsidised if you meet the criteria to apply for Special Authority, otherwise it costs $1,000 per injection (so $2,000 per month)!

Basic requirements before being subsidised are (among other things)...

Patient has had severe and active erosive rheumatoid arthritis for 6 months duration or longer.

Patient has tried and not responded to at least 3 months of oral or parenteral methotrexate in combination with sulphasalazine and hydroxychloroquine sulphate (at maximum tolerated doses).

Patient has tried and not responded to at least 3 months of therapy at the maximum tolerated dose of leflunomide alone or in combination with oral or parenteral methotrexate.

Patient has persistent symptoms of poorly controlled and active disease in at least 20 swollen, tender joints.

Patient has a C-reactive protein level greater than 15 mg/L measured no more than 1 month prior to the date of application.

Unfortunately the injections do not replace all the other drugs he has to take, they are to be used in conjunction with them all so he still takes up to 9 pills per day (down from 11). Half of those are to counteract the side effects of the other half :roll:

He now has an even more compromised immune system so has to avoid people with bugs, have flu injections and pneumonia boosters. He also has to go onto antibiotics immediately if his temp goes over 38C. He has a little card to present at any hospital ED to give him priority treatment if his temp rises on a weekend and we can't see the GP.