Hi I am Richard.48
Diagnosed 9 years with ankolying spondylitis and chronic uveitis, been on pred for 9 years , now going onto Humira anti TNF, wishing to connect with others who are experiencing Humira.
Hi Richard. Welcome to this forum. I hope you have had a chance to read through some of the posts. You will find this a very friendly site. I have been on Humira for 8 years and it's been a good drug for me, in terms of controlling my RA. Hopefully someone will come on and answer in respect of AS. Wishing you good luck.
Thanks for your kind advise. I am starting this week, and a wee bit worried. How is with yourself going out in the sun, the steroids have made me virtually zero tolerant to uv qnd sun, is it the same with Humira, I read somewhere.
I have been on pred. for 31 years, on a low dose for the last few years, can't say they have been a problem in respect of the sun, however I have developed a problem with Humira the last three years, with non melanoma skin cancers, so need to change to Rituximab, have been reluctant as Humira as I said, has been a life changer in respect of my RA, steroid use has given me osteoporosis, so hopefully you also take a Vit D supplement. We are all different in how we react to drugs. I also had to change from Azathioprine to methotrexate to help with my skin. X
I have ankylosing spondylitis Nd peripheral RA. I was on humira for nearly a year, to no positive effect. Now on enbrel and a few months ago, Started on 20 mg methotrexate too. Unfortunately, I e yet to see any significant improvements- it I live in hope!
On the other hand, a friend of mine also with AS has seen a massive difference since beginning humira and it continues to be really Positive for her. Different things seem to work for different folk.
In terms of the sun, with any biologic, I've been advised to be careful of over exposure .
I wish you the very best and hope that humira works well for you.
Thanks for your advise.
I guess I got to give it a go, but the list of side effects are daunting bit, everything has a price.
Sorry to hear that it was not successful for you, but hopefully you have found an alternative.
I've been on humira since April 2014 and it has been a great medication for me. I have very few side effects and I find the injection (a pen) easy and painless. It's been life changing for me. I am so much better on this combination of methotrexate and humira.
Happy to answer any questions you may have. I know we are all different and it's only opinion and personal experience but I think it's useful to know how other people manage.
Oh and welcome.
Thanks for replying.
Interesting to find out more about this product and medication.
I recently started on a biologic (Benepali) for my AS, and am already noticing the difference in my pain levels. Starting to feel more like my old self, although still struggling a bit with fatigue. Side effects lists can be daunting but as someone once said to me on here, so is the list of possible side effects on a packet of paracetamol!! Good luck, and let us know how you get on.
Yes your right.l thanks you for your information.
I'm experiencing Humira, thank heavens! As with any biologic, it may work extremely well, or less well, or not at all or gradually fizzle out. But I think you've got a very good chance of a great result.
9 years of steroids is a long time. I appreciate that it may have been necessary, but compared to the damage that long-term steroids can do, Humira should be a real treat for your body. I don't have any side effects and I've never avoided the sun, Humira doesn't stop me doing things, it enables me to do them.
I just can't understand why anyone would be given steroids for so long when there's the option of biologics .... still scratching my head there .... but anyway, Good Luck!
Thanks for your kind advise and understanding, the steroids were used to control the eyes a secondary affect of ankolysimg spondylitis, so now going to try Humira,the optomologist is very pleased as it will assist this disease.
Iv got something very simeler to you im due to start benepail soon i was on enbrel for 7 years but had to come off them for other reasons they worked very good im just hoping that the benepail works too im sure the humera will work well for you good luck xx
Hi Richard I have just had my 1st lot of Humira delivered today and now waiting for visit from nurse to go theough the procedure. Even tho the nurse at Hosp took an hour to go thro it all. Im a little apprehensive as Ive tried Mthz both pills & injection & Sulfasazine & they all made me ill but we have to stay positive.
Let me know how you get on.
Thanks for your understanding.
I was taking Humira for 14 months. It worked very well for about 10 months but then gradually stopped working. The only side effects I experienced were bad headaches with the first few injections but nothing after. Clemmie
Thank you for your advice. With the headaches did you use the usual paracetamol, headache pills yo help. ..?
Yes, I took paracetamol and brufen worked fine and each injection, the headache was less until no headache at all. Also, make sure that you take the injection out of the fridge at least half an hour before use to give it time to warm up - the liquid stings wjen going in. Some people find that numbing the area with ice before injecting helps. Clemmie
That is very useful information thanks.
Did the healthcare people deliver monthly,?
I am talking with them tomorrow and start my first injection next week.
Also can you travel overseas with this medication?
I'm based in Saudi Arabia at the moment as my husband is working there, so my medical insurance pays and I collect enbrel at the hospital. I got the Humira the same way. You can travel overseas, you will need to ask Healthcare at Home for a letter which you will need to take and I believe they can let you have a container to keep them cold. I bought a travel pouch for mine from Amazon. Also check with any airlines you use as to their rules regarding carrying injections. Hope all goes well for you and that it works quickly. It worked very quickly for me. Clemmie
Thanks a million, I will certainly look into it, that's amazing thanks very helpful.
Hi Richard, again. Mine are delivered every 7 weeks, I usually have one left in the fridge, they have to go into the fridge when you receive them. If you need them to deliver to your workplace I understand they will, you can discuss all this with them. I used to take mine to my surgery, so the nurses could do the injection for me, they have however changed the formula and taken the sting out. I now do them myself. I only inject my stomach though. They also provide a sharps bin for you and will collect it when it's full. You can take them abroad, I believe you can get a special container from the chemist. I have always worked round it, so as not to have too. I would also add, I do still get tired the day after taking, but we are all different. All the best G. X
Thanks ever so, that has been most helpful.
Healthcare at Home have been fab at delivering my medication. So impressed so far by their service. One tip, don't go playing about with the sharps box when they deliver it.... I did and managed to lock it before I even got to put one injection pen into it!!!
I have been on Humira for 2 months, and having 1st blood tests in a week, if all well, I must start to taper Prednisolone. I am in currently on 10mg.
Does anyone have any advise?.
for 9 years and been on several treatments that have not lasted long. I have now been put on Humira does...
My Humira is delivered every two months by Healthcare at Home. Since this company changed their delivery...
all relatively pain free. Having had my second Humira injection yesterday ,I have felt just terrible...
Start a Community