Help...Feeling Desperate | Arthritis Information

Hi....this is my first time on the message board, and writing out of desperation. Four years ago, while pregnant, I started have serious joint pain. Since my daughter was born I have been on disability. I have seen the top rheumatogists in the Province of British Columbia and have them all mystified. They agree it is a Connective Tissue Disease, possibly RA, possibly Lupus Arthritis, possibly Wegener's Granulamatosis, or Still's Disease. They can't seem to narrow it down. I have severe pain in most of my joints, but the worst in knees and elbows, fingers and toes. Tests show inflammation in pretty much every joint in my body. I suffer extreme fatigue, chest pain, flushed red fac, neck and chest, bruise very easily, have had major blood in my urine for months now, and have had menstrual bleeding for over a year non-stop which they can't seem to stop and don't know whats causing it. THERE is lots more, but that's most of it.

Having 2 precious kids (3 and 5 years old), I struggle the most with the exhaustion, fatigue and pain. I want to have energy to play with my kids. I'm starting to feel depressed as we have seen little response to treatment in 3 years. MY question is this....is it normal for treatment not to work. I'm on high doses of prednisone, plaquenil, methotrexate injections but am still in pain all the time. IS there hope that anything will work, and any suggestions as to what my actual diagnoses is? Is it normal to take 3-4 years to get an actual diagnoses?

THANKS

Desperate in Canada, Becky

Hi becky,

I was just wondering if you Rheumy had you on enbrel, remicade, or humira. One of those three drugs helps give some of you energy and motivation back. I have been on enbrel for about 1 year now. It didn't work wonders like I thought it would, but I do have more motivation and energy and has helped some with my symptoms. I guess at this point we take what we can. I also take pain medication which doesn't take all the pain away, but does take the edge off. Maybe talk to your doctor about enbrel or another drug in the same class. I hope you do better.

Tasha

Thanks Tasha,

I haven't tried any of those drugs yet...but I know my Rheumy is planning to try something new in the next couple of months as nothing seems to be working, and I'm getting worse rather than better. I'll mention the above to him...thanks.

Becky

Hi Becky

I'm a first time poster too, and I want you to know that you're not alone! Three and a half years ago, I was diagnosed with Rheumatiod Arthritis. Then the dx changed to Fibromyalgia. Then it became Mixed Connective Tissue Disease. I hurt all over, and am extremely fatigued. I have seen three rheumy's, and this is where I'm at. From what I understand, it does take a very long time to finally figure it all out. My current rheumy tells me that I have overlapping symptoms of RA, Lupus, and Scleroderma, and that eventually it very well may be full blown lupus. I have taken Prednisone, Plaquinil, Arava, and Methotrexate. Right now, I am on 25 mg MTX weekly, and my rheumy is considering adding Kineret, because my sed rate is still very high. Eventually something has got to work! Just hang in there and keep on trying until you find the right meds that make you feel better. And know that you're not alone!

KiKi

Thanks Kiki,

I know there are many fellow sufferer's out there but when you're in the midst of it, and feeling overwhelmed you forget that. I'm doing 20mg MTX right now, along with Prednisone and Plaquenil, and Oxycontin for pain. I'd really like to reduce my Prednisone, but until they can get the inflammation under control they are hesitant to do this. Last summer my body coundn't tolerate the heat and sun, and after a week camping with the kids my arms were both covered with blistering sores. Plus I get very rashy and pink flushed skin all the time...so they are suspicious it may be Lupus and RA?

Becky

Hi Becky,

I have been on Remicade and Methotrexate combo for a few years. I have a bad initial reaction to Remicade that passes in a few days. Other than the reaction, my body seems fairly normal except for some pain in my hands. I have considered to switch to Humira but not sure yet. Make sure you check with your disability insurance provider before going on Humira or Enbrel. I don't think Medicare etc. will pay for self injected meds at this time.

Thanks Al.....I wouldn't have thought about that side of it, so am glad to know. I am self injecting with methotrexate, but that is by choice, because it is also available in oral doses so Medicare covers that. But I'm not sure about Enbrel.

Becky

Becky, where are you getting injectable MTX? I was injecting, with fairly good results, but it seems that there is a shortage, and my pharmacy can't get it, so I am taking 10 pills orally. It's horrible. I feel awful for a few days after I take it.

KiKi

Hello Everyone,

I have been lurking in the background, watching and reading how ever one is coping. I must admit, you all have a wonderful way of helping, not just yourselves but everyone too. Great job. Well done...

Being fairly new here and with RA (2 years), there is so much to learn and to be honest, this is hard work...So I decided I needed to get the information I need from the people who know what is "UP". YOU!

I have been on 20mg of Methotrexate for about 1 1/2 years, along with Azulfidine, Leucorvorin, Bextra and Ultram, Previcid and Prednisone from time to time, Oh Yes, don't let me forget the Lexapro....Nothing has really worked and still am having up and down waves of inflammation, not sure I have even had a week without a flare. so now my RD wants me to go on Enbrel. I can not in all honesty say I am in a lot of pain, Thanks to the Methotrexate + Bextra ( wish it was Vioxx) but I can say that I am in a lot of discomfort and getting more and more fatigued, so I have decided that I am not going to keep this constant roller coaster ride going. I am going for the EMBREL...I came to this decision with your helpful post and the fact that "I am ready for better days" and not more anti-depressants....

I hope my thoughts may help someone when it comes to trying a new drug, even one we have to administer to ourselves...I long for "the good old days" but that will never come to pass again. So instead, I will walk with my hands out and hug the "new days, I have in front of me"...Thank you everyone for your wonderful encouraging post...You helped me to make a hard decision, easier.

Forever Blesssed Be.

Toni

Kiki, in response to your question, I am in British Columbia, Canada, and haven't had any problem getting injectible Methotrexate, so it may be fewer folks up here are injecting. I know several people who are taking it orally, but haven't met any injectors yet. I'm still in my first few weeks so have to give myself more time to see whether it will start helping. So far not a huge difference in terms of pain or fatigue.

Toni,

Good look with the Enbrel. I'm injecting with methotrexate, and although the first 2 times my hands shook pretty good, it was actually fairly pain free. It's just the thought of injecting that's scary...I do it in the tummy (my little extra roll helps of course) and feel nothing.

Becky

Hi Becky, I'm sorry to hear about your pain. You seem so young to be going through this. I have an aunt who has been suffering for 5 years with severe joint pain and connective tissue pain. She has been on many of the same meds you listed, but nothing really seemed to help. She even went to a chiropractor and was stretched. Nothing really helped until recently. We had been hearing about hyaluronic acid (HA) and how it helped people with RA. She ordered a bottle of Essential Renewal Joint solutions from www.bigappal.com and started taking it. Within 2 days her pain was gone and she is wanting to share this withe everyone. It may be worth your time to try a bottle. My aunt said there was a 30 day money back guarentee.
Good luck. Wishing you a healthy painfree future.
Hey Becky, My symptoms are alot like yours and my docs were hesitant to diagnose me with RA last fall when the RF test came back positive, but at this time there seems to be no doubt. There is a newer test that is highly specific for RA called CCP AB that looks for an specific antibody involved with the RA process. In my case, I was RA positive but the sed rate, ana, and CRP inflammitory indicators came back normal, however my WBC, platelets and MCV all come back high. My presentation was not typical with pain redness and swelling from knees, shoulders, feet MTP, ankles, neck, wrists and finally hand MCP and PIP. I also have facial flushing, bleed easily and get a purpura like skin reation when I rubb against anything. I had erosions on my hand xrays at the time of diagnoses which indicated RA. I started having irregular menes bleeding and some very new research is starting to link hormonal stuff to RA flares in perimenipausal women (like me) and also to pregnancy/post partum which could be your situation. I just spent a couple weeks at the mayo clinic as I have had some other weird things that have my docs at home puzzled. What I am learning is that there is a tendency for autoimmune diseases to "cluster". I have 4 that surfaced in 2004 and am in what I call "autoimmune hell". The mayo RA doc commented that he has seen other women like me with severe RA and normal inflammatory indicators and suspects in my case that the RA has been active for quite a while at a lower level and something has changed to cause it to acceralarate this last year. I started missing periods at the begginng of last year and then mid may having heavy periods every two weeks and then starting bleeding continually in early aug for 2 1/2 months until a doc prescribed a progesterone cream. I was guessing that the hormonal changes were probably the final trigger to set of the RA to a disabling level and a few days ago I found several research articles on medlineplus that link hormonal changes to spikes in RA activity with menopause and pregnancy. There appears to be some benefit to breast feeding to lessen the RA spike, however, no correlation to women who were on HRT to lessen the RA. Sorry for all the detail. I also am having a very difficult time with this and am not working as anything I do results in severe flares. I have a very good GP doc and am dumping the RA doc as she is not understanding my RA condition and only had me on one DMARD, sulfasalazine, when all the current research indicates that early and aggressive drug therapy has the best outcome. I start adding Methotrexate (injectable) tommorrow and probably remicade or enbrel in 3 weeks. hang in there, it is tough, but they also correlate those who are more opptomistic with a better outcome...probably the stress aggravates the RA.
marcia

Hello Marci and Crissy,

Thanks to both of you for taking time to respond. Marci, you and I have very similar sounding stories, and your treatment plan sounds exactly like what my rheumatologist is planning. We're thinking the next step is to add enbrel to the methotrexate and plaquenil so we'll see what happens. The Humira sounds like it is really working for people too, so I'm curious to discuss that one with the doctor next time I see her. Thanks for the encouragement from both of you. I've been on disability since my daughter was born which is when this nightmare all started, and not working has been a huge adjustment for me. Never having been sick a day in my life to being very sick all of a sudden has forced me to learn how to be sick. Sounds weird, but some folks are better patients than others....I'm sure you know what I mean. I've had to learn how to ask for help and not try and do everything myself. I am blessed with a wonderful support base of family and friends and Thank God for that.

HANG in there

Becky

Hey Becky,
Looks like tommorrow now for the methotrexate. There is a problem with the preservative and a resulting shortage. Someone in this thread mentioned they were having a problem and today my GP doc called to tell me the local pharmacy was unable to get but she found some in Naturita Colorado and the pharmacisit has it in the mail. If anyone needs his number let me know and I bet he could mail it to you. I had a pretty bad day with the brain fog/fatigue and slept most the day. I did have a really good thing happen with this pharmacist that I will pass on to everyone. I think one of the keys to getting thru this is to get a good team to help and this pharmacist is a keeper for me. I have never had any kind of help from a pharmacist before and mostly think of them as the neccessary drug dealer in this world af western medicine. This guy, Don, spent 20 minutes on the phone to help me figure out what drug therapy to discuss with my GP doc for RA. He helped me to price out various drugs, telling me his cost and my cost and then offered advice and recommendations based on his experience that made total sense to me. He was very knowledgable about RA and which drugs seemed to help with various types of inflammatory symptoms for most people. He suggested I check with my insurance prior to chosing which biologic drug as he said sometimes they will not pay if I self inject and it may be better to have them administered at the clinic so the insurance will cover it. He ran my "insurance discount card" for the MTX and told me that the card probably would not do much as he marks his drugs down more than most due to the competition. He tells me the MTX without the card was .27 and with the card was .53 and gives me the lower price when he could have charged the higher rate. My GP doc described him to me as a "pharmacological god". I am going to have him work with my doc to help me get figure out some of the drug stuff for the next few months as I am not sure if I have a Rheumatology doc anywhere in my area that I trust at this time. I hope you find some relief soon with the appropriate drugs, diet and lifestyle changes. I am also doing some of the alternative stuff as I figure it can only help to reduce some of the inflammatory process and help offset some of the drug complications. Seems like the best supplements are pointing to EFA, evening primrose oils, omega 3, fish oil stuff (farm raised salmon has the wrong oils), curcummin and a diet that eliminates or reduces "inflammatory" foods like wheat, dairy, corn, nightshades, red meats and also organic to eliminate the preservatives , antibiotics, hormones and other nastys. anyone else had luck with any of this.
marcia

Becky,

Just a note to let you know you need to be very careful about sun exposure when you are taking plaquenil - it makes you photsensitive, and as you found out, that can create major problems. Don't know why you weren't told that.

I have gone the alternative route, myself - acupuncture and Traditional Chinese Medicine, and am very happy with that. You might consider trying some other courses of action in addition to what you're doing now.

I wish you the very best and hope something works for you soon!

zzoi

Thanks for the updates...glad you were able to get the methotrexate Marcia, and I agree, having a good team makes a huge difference. I have a great pharmacist too which has eased the burden a lot.

Thanks for the note on the sun exposure, I was aware this could pose problems, and was trying to take precautions, stay in the shade, stay covered etc, but it's so hard with a 3 and 5 year old who love to play outside in the summer. I'm trying to achieve a balance in my life that allows me to still be mommy, but take care of myself too.

I've also seen a natural path doctor, and have been taking some natural supplements, as well as monitoring my diet carefully with all the things you suggested Marcia....definitely the sugar reduction has helped. I'm open to anything that will help me feel better.

I have found since being sick that everyone and their dog has a cure, so you do have to weed out the money making scams, and find what works for you.

TAKE CARE all,

Becky