still no "real" diagnosis!

[irish]

Just a reminder that Plaquenil doesn't slow the autoimmune attack on our body. It is a antiparasitic drug that has very strong anti-inflammatory action.

It has been the first line of treatment for RA for many years---along with the prednisone. Prednisone acts fast to decrease the symptoms/pain, etc of the autoimmune diseases and is usually given with the plaquenil.

It takes the plaquenil many months to kick in usually and the prednisone helps with the symptoms until the doc and the patient decide that the prednisone taper should start. As one tapers off the prednisone there shouldl not be an increase in symptoms if the plaquenil has kicked in. If the symptoms increase then the prednisone dosage is usually increased for another month- 2 months, etc whatever the doc decides and then the taper can be started again. Quite often at this time the taper can be continued as the plaquenil has kicked in and is taking care of the pain.

Many people have less pain and less fatigue with the plaquenil. My lungs seemed to have less thick mucus in them as in not as thick and maybe a little thinner. However, I haven'et noticed an increase in secretions of any significance. Just by virture of having less swelling in the mucus tissues of the lungs, throat, nasal passages, it may seem that the mucus is flowing better and it probably is. When the swelling is down in our mucus membranes we do feel bette Irish

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[irish]

When we get to the point that we seem to have increasing symptoms and the plaquenil doesn't seem to be helping it is usually the time to start on the stronger medication such as imuran, methotrexate, cellcept, etc. These last three drugs (and there are more in this category) take time to kick in and the docs often continue the plaquenil. Some of our members have quit the plaquenil thinking that they didn't need it and in a couple of days or more they found themselves very, very miserable.

Most of them restarted the plaquenil as they found out that it was doing more for them then they realized. After the other medications have kicked in and there has been some physical improvement the person can then try stopping the plaquenil again.

The methotrexate, imuran, cellcept are some of the drugs that a person has to try and fail prior to even being considered for the Rituxan. This is not a bad thing. Many , many people are doing very well on these oral drugs Remember that killing off the b-cells with the rituxan is not of minor insignificance. This is a big time event that has its consequences at times. We have to wait to be offered this drug before we can even think of making a decision to try it. Irish

[eyeamdry]

I have been on both Plaquenil and Methotrexate for 5 years.  One specific thing I can remember is about Methotrexate.  I think I started it a little before Plaquenil.  I was afraid to take "7" pills at one time (once a week) and wondered what on earth.  Well, then I took my first dose of MTX and fast forward 6 days and it was the day before my second weekly dose of MTX was due.  I began to wonder, and think....."I think I am feeling enough better to know I am."  I indeed was feeling better after that first dose.  I know it sounds goofey, but I had been so sick for so long that I think the "hit" of MTX was enough to do some good for my body and I could recognize it.

Although I've been on these two meds for 5 years, and others including Lyrica, my doc has never suggested I take stronger meds.  I totally believe in her and know she would suggest if she believed it would help me, but I am probably at my best--which isn't very good most of the time.  I know none of us feels as well as we wish we could.  Lu8cy

[matildamillicent]

Irish, Plaquenil does slow the autoimmune attack. It is a DMARD (disease modifying anti-rheumatic drug). It does reduce the inflammation but it also slows the disease. There are studies that have shown the Plaquenil can prevent and slow down kidney disease in Lupus. It's an anti-malaria drug and it is an anti-inflammatory. It does not actually suppress the immune system, but it modifies it at a cellular level.

[eye2dry]

Gold55.

I see you use Voltaren gel to your toes.

I  had painful toes on my right foot at the beginning of my downward spiral towards the sjogrens diagnosis.

Do toes on both feet get affected? Is yours on and off?
Mine seems to mostly attack my right foot toes and it is a deep burning stabbing pain that shows up first thing in morning, after sitting/laying too long and getting up.

Do you have good success with the Voltaren gel?


eye2dry

[gold55]

Thank you Mshistory, Net, Doxie, Matilda and Irish for your responses to my issues.  I learn from every post I read on this forum.

@eye2dry.....my feet are what led to my (two) diagnoses...., not dryness, not fatigue...both my big toe joints are affected but I have nerve pain coming from all the toes.  On some days it was very hard to walk and I have given up all shoes except my KSwiss sneakers and slippers!  Thank goodness I'm in medical where all patient care staff wear walking shoes!!  I'm in a desk most of the time but I still see clinical studies patients so I wear comfortable clothes and a white jacket and my KSwiss, thank the Lord!!!
My rheumie initially gave me a small bottle of Pennsaid drops for my toe joints.  I think the copay on the drops is ~$80.00....I was lucky to get this freebie on my first visit.  It really helps my feet when my big toe joints are aching so I thought I'd go the cheaper route and get the Voltaren gel.  This should be more like a $20.00 or $30.00 copay.  I haven't picked it up but the Pharmacy asst said she uses it on her knees and it works fast and takes the pain away.  I expect it to work like the Pennsaid drops...you only need 2-3 drops or dabs of gel.  I sure wish it helped muscle pain....I may try a bit on my thigh and left wrist when they act up.  I hope this helps.  Once I get it in my hands I will report back!
Take care everyone!  Ohhhhh.... I seem to get relief from peripheral neuropathy pain throughout my day being on Effexor 75 XR.  I had read all the dryness stories from Cymbalta so I opted to go on the Effexor because it was an extended release capsule.  I must say I am more comfortable than I was prior to taking it.   

Did you guys recently read about Jack Osbourne being diagnosed with MS??  Sooo sad he's in his 20's and just had a baby.  I don't know but it seems like there's more autoimmune being diagnosed than every before.  I could never do what you guys do at your young age and with little kids, etc.  My hat goes off to all of you with so much responsibility and then handling a disease and some with diseases of the spouse and kids!!!   You amaze me daily!

Jill

[Net]

I totally agree where would we all be without each other and comments and inputs
Thanks for the tips about the toe and feet meds since I just seem to be starting with all that fun stuff too. Seems to be my big toe joint mostly on the right foot and I am also having burning through the tops of feet, tendons?--sjogrens?osteo? both?
Keep in touch.-Net

[gold55]

Net, you sound so much like my story.  I started with the right big toe joint about 10 years ago.  It acted up now and then and I'd take Ibuprofen and rest it for a day and I was good to go!!  Not until a year ago did my left big toe joint act up which sent me into the doctors office.  I also had fullness in my right hand with some cysts and nodules appearing on my thumb joints and the end joints of my right fingers.  This is when they ran all tests which came back perfect except the immunology panel   Ever since then the type of pain, arthritis, whatever you want to call it has been different from the 10 years of pain I experienced during a flareup in my right foot!  Same thing with my hand....it's more of an inflammatory type pain, nerve pain and this time I don't seem to get a reprieve from it as before!  I also have boney growths in my big toe joints which makes me have to buy a half a size bigger shoe.  I've got to be careful not to buy anything that rubs on the joints....they are painful to touch.  I read that article of Elaine Moore's which states SJS sufferers can end up with erosive osteo in the hands and feet and I felt that's exactly what's happening to me.   My rheumies don't see it because they are still waiting for me to acquire the bone dry mouth and eyes of SJS!!!!   I think I've had SJS if not all of my life, for at least 25 years!
Isn't it sad how we may know best about what course our disease is taking yet we don't have the power to prescribe meds or order tests!!  I would have put myself on Plaquenil at this recent visit however, now my rheumie wants to wait another six months.....why???  perhaps to see my toe joints grow another shoe size so I'll have to buy all new shoes again!!!!   or maybe she's waiting for my fingers to match my toe joints??!!  It's frustrating to say the least    

[Net]

I am supposed to keep in touch with my Rheumy about this toe stuff, he is talking an mri to look for erosion like you said.  Sjogrens or not they  sound like they should be checking you for that also and guess what ?....I think the treatment is plaquinel and similar drugs that we take for sjogrens. I am back to work after 3 wks off of a bad arthritis flareup and gallbladder removal, related?   Feeling pretty good on my feet but mostly that right one and the top of my foot just burns all the way to that bad toe. I had a joint injection 3 weeks ago so I don't know if that toe will come back to haunt me soon. Push Push Push those Dr.s , you know your own body. Good Luck