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New RA Victim with lots of questions

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Rheumatoid Arthritis
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Posted 5/9/2013 3:30 PM (GMT 0)
I've experienced finger joint pain for 8 months now.  After xrays, blood tests, etc., I was referred to a Rheumatologist.  She tested blood for many diseases, but came up with nothing.  She diagnosed RA.  My fingers hurt all the time.  I have trouble gripping things, opening bottle tops, carrying shopping bags, etc.  The doctor prescribed Mobic as an anti-inflammatory (although, to be honest, I do not see inflammation in my fingers), and Plaquenil (she said this was the least harmful of all RA drugs...only 1 in 5000 have adverse reactions).  Well, I was 1 of the 1 in 5000.  I developed severe itching all over and she said stop the drugs.  I have a slightly elevated liver enzyme, so she is hesitant to put me on the other RA drugs that have side effects that cause liver damage.

Sorry for the long story, but I am terrified of taking drugs long term that have damaging side effects.  My sister was on a drug long term and this year she had breast cancer, a tumor on her thyroid and has stage 3 kidney disease all caused by the drug she took.

I'm 53.  Looks like I will be taking any RA drug for many years.  The only thing that even makes the slightest difference for my pain is heat.  If I wrap my hands in a heating pad, the pain disappears.  Unfortunately, only to return as soon as my hands cool off.

I would love to hear other people's stories.  What do you do for the pain?  Do you experience side effects from any drugs you take?

I'm afraid to ignore the situation, but even more afraid of the drugs.  I feel that ignoring the problem may leave me with crippled hands at some point.  Or worse...spreading to other areas.  Please HELP!  Thanks.

Posted 5/9/2013 3:43 PM (GMT 0)
denpg I am so very sorry wish I had some good advice. I am on plaquenil and all other kinds of stuff..... I would rather be on this than the way I was however. I have fatty liver and have to be careful with my levels as well. That being said everything is better for now. Sorry to hear about your sister that is terrible. Like you heat helps me. I frequently use a heat pad. Only for the pain to re-occur when I stop it. But we do what we can to help. Only when I have a flare do I have to do this. Thank goodness the good days outweigh the bad since being on all the meds I am. Meds can be terrible but they can certainly be a life saver too. Hope something I have said helps. I understand the terror in taking them as I worry also.
Peggy
Posted 5/9/2013 10:10 PM (GMT 0)
I can share your fear of the drugs. It took me about two months to go feom NFW am I taking those nasty things to PLEASE NOW! The way I see it is quality of life. If they take my quality of life from non-functional to functional and hopefully thriving, I'll risk it. People get cancer and have health problems all the time, I do not necessarily believe that because some was on drug A, and they got B, that drug A alone caused it. I have had wonderful results with Cimzia. I went to my RA terrified of biologics, but came away preferring them over the older drugs. I'm not 100%, but I can work and function 75% of the time. I think more drugs are in my future and I am so beat down with flares that I'd about sell my sould to be better. We take risks every day, and so many armuch worse. I don't believe this diminishes the risk, it just helps put into perspective that this is another risk/reward decision. Hang in there and good luck, things will get better.
Posted 5/10/2013 1:54 AM (GMT 0)
Hi Denpq, same as the others, you start off feeling like no way are you going to take these meds and in the end the pain gets so bad you'll take anything and then after you adjust to taking them you think, why didn't I take them sooner. They give you back quality of life. Just remember to drink lots of water and help out your liver and kidneys with the toxicity.
On a non med front try taking huge doses of fish oil or krll oil. My rheumy tells me to take 6 capsules a day, well actually she suggested 12 but they repeat on me too much. I take 2 with breakfast, 2 with lunch and 2 with dinner. They act as a natural anti inflammatory, I do notice if I don't take them so they do something!
Hang in there, so many people go into remission once they find the right cocktail of meds to suit your symptoms. It is very easy to feel depressed when you first get diagnosed but there is so much research and information about RA now, start empowering yoursef by reading and realising you can take some sort of control over this disease.
Goodluck, golitho
Posted 5/10/2013 4:20 AM (GMT 0)
My experience has been the same as others have shared. I was scared big time to take a medication that was going to suppress my immune system. I had to sign a document saying I would not sue my Doctor when I first started Enbrel. I was shaky when I signed it in fact. In the end I was so desperate I was willing to try just about anything. Every day I was in massive amounts of pain and constant depression.

I had almost 12 years of good health on Enbrel. It made a HUGE difference for me and helped to manage my disease far beyond what I expected. All of my nodules completely disappeared in 1 years time. It was literally like waking up from a dream.

There are a lot of things you can do as well to help to keep your body healthy on some pretty heavy meds. Consider juicing. It can help to rid your body of harmful things as well as reduce and fight inflamation. Carrot juice is great for that along with cherry juices. An added bonus is that they taste great.

Tonight I tried an Ionic foot detox for the first time. My feet have been hurting really bad and I had the opportunity so I thought what the heck it can't hurt. After trying it I think I'll give it a shot, my feet went from a grey color to really looking alot better.
Posted 5/10/2013 1:53 PM (GMT 0)
Thank you all so much for your thoughts and information. I really like hearing from people who are experiencing the disease, not just doctors or websites. I appreciate your responses so much. xxDenise
Posted 5/10/2013 8:49 PM (GMT 0)
Right now I' m not taking methotrexate, due to my eye doctor finding macular degeneration in my eyes, so I' m waiting until June 19, to see if my eye doctor can dtermine if its the RA or mtx causing the macular degeneration and I hope its not the mtx, its been very hard not taking the mtx as I could tell it was helping my swelling was down so very much I felt I had my life back but with the eye problems I've been in a very depressive state, but in no way do I blame the doctors or meds.
If you can tolerate aqua therapy you could try that with a well heated pool.
Many well wishes....
Posted 5/15/2013 7:05 PM (GMT 0)
Some twenty years ago I woke up one morning and found myself needing help to get out of bed. I was stiff all over and in pain. I had to hold onto walls and furniture to move around. I got diagnosed with RA. I spent the next several years going from doctors to specialists all prescribing different remedies that seemed to get more and more expensive. To top it off none seemed to work. After awhile I was prescribed Celebrex and that was the only medication that gave me any relief and some mobility until now. I had to take it daily since my symptoms returned immediately if I missed.

Some months ago a friend introduced me to a coffee enriched with a herb called Ganoderma Lucidum. I thought nothing of it and was really only looking at this as a business opportunity. I noticed something different right away though. My energy level and moods started to improve so I started researching this herb. What I found was hundreds of studies on Ganoderma on the US National Library of Medicine government website called PubMed. (http://www.ncbi.nlm.nih.gov/pubmed/?term=ganoderma+lucidum)

Here’s what I found:

Ganoderma Lucidum detoxifies the body. It Oxygenates the body. Supports the Immune system. Boosts Energy. Provides more then 200 Phytonutrients and 150 Antioxydants. Helps with Blood circulation and promotes cell rejuvenation.

I started drinking this coffee (they have other drinks and in pill form as well) religiously since late August 2012. Two, three or more cups a day. This too was different since having more then one regular coffee or coffee from the local drive thru usually upset my stomach and made me jittery. And why was this in coffee? Well as 80% of North Americans know coffee is very addictive. Many people forget to take pills and life tends to get in the way of good habits but most people never go without drinking several cups of coffee a day!

I’m extremely happy to report that since early January of this year I stopped taking the Celebrex and my symptoms have not returned after all this time. I’ve done nothing differently with my daily routine. My diet has consisted of cutting down on sugar intake and nothing more. My joints are no longer warm to the touch and the swelling and pain in them is gone. I can now drive for hours without pain and I am saving all kids of money on medication.

Definitely something you might want to look into.
Posted 5/15/2013 7:29 PM (GMT 0)
Thank you very much. I will definitely look into that.
Posted 5/15/2013 7:47 PM (GMT 0)
As I was in a car accident years ago, I take norco for most of my back pain, it's not a nerve pain medication, but I cannot tolerate any nerve pain medications, I also take a muscle relaxer, which helps the most!
Posted 5/22/2013 2:32 AM (GMT 0)
I am on MTX shot weekly, predisone as needed, loritab for pain, soma and folic acid. The only side effects I have noticed since I started the MTX is the hair loss. The first shot I gave myself I was sick for almost a week. I haven't had much luck so far with my meds but I have to keep trying until I can get my life back the way it use to be. Hope you have some luck with your meds!
Glea
Posted 5/29/2013 9:42 PM (GMT 0)
I take Methotrexate 15mg, Prednisone 15mg and will be starting a biologic in another month. I, too, was concerned about the side effect profile of many of these medications. I am an ICU nurse, and exposed to all sorts of things in my line of work...so having a weakened immune system is not a good thing.

That said...the pain from the RA became so bad that I would have taken anything to get rid of it. The worst of mine is in my knees. Prior to starting these drugs, I could not climb the stairs at home. I could not get off the toilet, nor get into the bathtub. I am 44 and was running 10miles a day less than a year ago. Nothing worked on this pain prior to starting these medications. I tried Ibuprofen, Celebrex, fish oil, Percocet...nothing touched it. I was taking Ambien to get a lousy 3 hours of sleep before my 13 hour shift. Two days of Prednisone and I was feeling 500% better. No joke. I can sleep. I can climb stairs. And I do not have to use the handicapped stall in a public restroom anymore.

I am lucky to have few side effects. I take 2mg of folic acid to help with side effects of the mtx. Seems to work. I get mild nausea and fatigue, but nothing I can't cope with. Liver function tests are fine. I do not drink or smoke. I eat an all organic paleo diet. I take vitamin D and calcium, salmon oil and a sublingual super B vitamin. I was an exercise nut before RA, and am just starting to get to a place where I can do some of it again. I am lucky to have found a good Rheumatologist and that has helped tremendously.

Not taking any medications is a choice, but then one risks further joint damage and potential permanent disability...and that scares me more than any drug out there. I am still working full time, but doubt that would be possible without the medications.
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