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Need some advice re meds for RA

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Rheumatoid Arthritis
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Posted 7/24/2012 12:22 AM (GMT 0)
Hi Everyone,

I have had RA for 6 years and in the beginning I was prescribed MTX, 5 mgs prednisone and folic acid.  Last year due to another problem not related to RA, I had to go off MTX prior to having surgery.  I hated taking the MTX the whole time I was on it so it was good to go off it.  I did not resume it and after a couple of months I noticed I was losing a lot of hair and I put it down to the side effects of MTX and going off it.  I have not resumed it at all and now I am only taking 5 mgs of prednisone for the RA but I am waking up every day in terrible pain in my shoulders, arms and hands and I am so completely worn out that I have no energy to do much although I try to function as normally as I can throughout the day.

I am not due to see the Rheumatologist for another 3 months although I can see him sooner if I want to.  I know I am on a very low dosage of predinisone but I put on weight so easily that I have resisted any attempts to increase it.  I hated being on the MTX and the doctor did prescribe Plaquenil but I was very alarmed at the side effects on the eyes and skin so I did not take that either. 

I know you are all probably thinking I am my own worst enemy but it just seems to me that whatever one takes there seems to be tremendous side effects with weight gain, or eye or skin problems or hair loss.  I know I have to do something soon as I just cannot stand the pain and being so miserable.

Does anyone take anything different that has had a good result with little side effects?  Thank you for reading this post.

 

Posted 7/24/2012 12:35 AM (GMT 0)
The eye problems are EXTREEMLY rare-my ophtamologist has been practicing thirty years and has seen fewer than 5 cases and all of them remitted when the medication was discontinued.

Have you concidered the biologics?
You are not just causing yourself pain now you are likely causing joint and possibly organ damage by not being properly medicated. The first thing I would do is call for an earlier appointment with a rhuemy-I would not put up with pain like that for three months.
Posted 7/24/2012 1:37 AM (GMT 0)
Just remember that pain meds are not treating the disease either-just the pain.  That said, I would never want to be without my tramadol again-I don't take it often but having it when I need it is important.
Posted 7/24/2012 1:49 AM (GMT 0)
Thank you both so much for your replies. I am thinking I will make an earlier appointment to see the rheumatologist. I just hate the side effects that come with all the meds that they want to feed you on. I do take celebrex every second day for the inflammation and 2 painkillers at night although it is not Tramadol as it makes me violently ill but I take one that I can stomach. I know I need to take more and like I have said previously, I am my own worst enemy but it is now getting to the stage where I am so tired and in so much pain when I get out of bed that it is almost unbearable.

Thank you again, I will make an appointment straight away.
Posted 7/25/2012 3:27 AM (GMT 0)
Contrary to what people believe, Plaquenil and vision problems are not all that rare, if this were the case, there would not be eye exams for this sole purpose. I have RA and used Plaquenil and was one of those who developed vision problems in my right eye, discovered during an eye exam for Plaquenil users. It is vital to get a baseline eye exam before starting Plaquenil, it is a serious medication and should not be taken lightly.

Plaquenil is a wonderful RA medication, and one of the less toxic medications when you compare it with MTX or a bio, and it does wonders for fatigue.  As long as you stay in contact with your eye doctor and monitor the health of your eyes, it can be of great benefit.

Posted 7/25/2012 2:52 PM (GMT 0)
Thank you Momto3, I needed to hear someone's opinion on Plaquenil.  I haven't commenced it yet because after speaking to the Pharmacist, the side effects he mentioned put me right off taking it.  I decided to endure the pain for as long as I could but I am running out of endurance.  I have made an earlier appointment with the rheumatologist but it is still a month away but I am on the cancellelation list.

I definitely do not want to go back on MTX and I know he is going to suggest I do.  I am just in so much pain in the morning when I wake up and I am so tired I can hardly drag one foot in front of the other.  I am trying to combat the pain with just a couple of painkillers, but I know I am not treating the disease.

Anyway, thanks again for taking the time to answer my post.

 

Posted 7/25/2012 4:20 PM (GMT 0)
Hi Harrington, I do understand your concern regarding meds, they *are* scary! All you have to do is make an appointment with your eye doctor, let them know you are going to be starting the Plaquenil and get a baseline, start your plaquenil and you should see a difference while using it, I did, just know it may take a few months to fully kick in, it was a Godsend!! Just go every six months and get your eyeballs checked :-) I took it along with Enbrel and MTX and I was actually going to the gym, I felt that good.

I so understand when you say you are tired!! The only other med that combats fatigue is prednisone, and we all try to stay away from that one if possible.

I wish you the best!

Posted 8/1/2012 7:37 AM (GMT 0)
I have had RA for the past 24 years. I developed RA when I was 20 yrs old. I have went through the full chain of meds. One thing you need to remember, when you are in pain your body is being damaged! RA affect all of your body, not just the joints. I am on Humira, MTX, and Arava. I was to the point my son was dressing me and covering me up at night. I chose to have a quality of life, yes all my meds have serious side effects, but now I (other than the obvious physical RA changes, most people can't tell the severity of my disease. Being wheele chaired bound versus the possible side effects, I chose side effects. Living with the imflammation can cause life long complications, including stroke and heart attack. I didn't ask your age, I am now 44 and feel much better than I did at 24! Good luck with your choice, hope all goes well. As far as prednisone, I was on 20mg daily for 7 years, yes became very fluffy, but one I removed some stress in my life and had a few other meds adjustid, I have been prednisone free for the past 5 years, lost the fluffiness! The question you need to ask is...what is the worse of the two evils?
Posted 8/4/2012 12:27 AM (GMT 0)
Hi all again,

I just wanted to say a big thank you to everyone who has offered me advice.

I have tried to see my RA doc sooner but cannot until 22 August but I am on the cancellation list.  I live in a regional area which is why it takes so long because there are only a couple of rheumatologists in this area.

I am still in a lot of pain.  I did see my GP but he could only offer increased dose of prednisone or stronger painkillers.  I have increased the painkillers I was already on but I so don't want to be walking around like a zombie zonked out on painkillers.

I am thinking I am going to start the Plaqunel but I am extremely worried about it but I think quality of life is better than pain and as Glendasdaughter said, pain is damaging my body.

By the way, I am 58 years old and have had RA since 2006, what a dreadful disease but I know there are worse.

Thanks again.

 

Posted 8/4/2012 4:37 PM (GMT 0)
Sorry to hear you are still in so much pain, but glad to hear you are going to start the Plaquenil, I would take it if I could, believe me! Just know it takes awhile to fully kick in, but hopefully you will see a difference.
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