rheumy appointment

[jims]

Hello everyone, I typed one message and lost it. Maybe because I didn't include a subject? Yesterday I had an appointment to retry under ultrasound to draw the fluid from around my knees. It was unsuccessful both knees using an 18 guage needle. I have had this done before successfully a couple of times the last time being a year ago. Last time 135 cc's each knee, and I now there is at least that much again. Now the rheumy and other rheumy in the room say the fluid is too thick. The only option on the table at this point they gave me is MTX. I got a steroid injection in each knee yesterday and that has really helped not only my knees but my whole body. I can move around wonderfully. I know it will not last. (Not my first time). I have done more housework this morning than i was able to do in a month!!! They both told me they have many patients on MTX and it is safe. Why do they tell patients this if it is not true? I have read many negative things about MTX, but this feeling good is really tempting me. Does anyone have experience with thick synovial fluid?  I have been on AP Since Jan. with small gains, but I am holding my own. I added Zith two months ago and flagyl about three weeks ago. My next planned step is the nizoral. I am a follower and patient of Dr. S In Tn. I don't want to give up on addressing the causes of my condition, versus treating symptoms statistically. At the same time I don't want this good feeling to flee again. Wow. Thanks for reading and I look forward to your opinions and insight into thick fluid and does any one at all out there have a good experience with MTX??:headbang: Jims

[Lizz]

Hi Jims, in Dr. S's chat last week he stated lots of patients use mtx with the AP. Why don't you ask him about it? Good luck!

[Trudi]

[user=1054]jims[/user] wrote:

does any one at all out there have a good experience with MTX??:headbang: Jims

Hi Jims–

A neighbor suffered with arthritis for 10 years and then went on MTX; she has been on it for 15 years; she needs to take folic acid for mouth sores, but otherwise doing well.

My mother used it and got well but then got shingles and had to stop using it; she is no longer bothered with rheumatoid arthritis; the doctors tell her it went into remission.

A friend's wife had such severe lung damage from MTX that she died.  He warns me not to use it.

Here is a website that has patient reviews:

http://www.askapatient.com/viewrating.asp?drug=8085&name=METHOTREXATE%20SODIUM

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Tiff]

jims,

My doc said that MTX has been used for many years and is considered quite safe in low doses.  She is not a rheumy but rather an oncologist, so she does indeed know this drug and others very well.  I trust her.  I think it has been over used or used in patients with other complications that might confuse the picture.  But apparently many people do use it with success for a long time, so I am told.

As for the comment by Trudi about the lung damage.  I read about this as well, and it is a concern for sure; but the fact is that RA highly correlates with lung problems anyway – and strangely so!  Upon autopsies some 17-40% of people with RA are found to have lung problems that were never dxed!  And the weird thing is that those lung problems vary up to 10 or more various kinds of issues!  Some RA patients get bad lung problems and die from them.  As I said, others are never even noticed.  How weird is that?

It is always difficult to tell what is caused by the disease and what is caused by the treatments used.  There doesn't seem to be a clear picture.  I know many people who blame the use of Accutane for later health problems, but I myself have some of those problems and was never treated with Accutane.  How can one be sure, years later, that a problem was caused by a drug taken long ago?  And that is really an easier problem than the MTX one to unravel.

I would definitely not do these other meds if I was able to manage with just AP.  I understand your frustration.  Can you please let us know what you find out from Dr. S if you ask?  Good luck, and I also know what you mean about feeling a bit better and seeing it go away.  Hard to take!  I had that experience with a couple short courses of prednisone this summer and it is nearly unendurable when the pain comes back.

[whaleharbor]

[user=1054]jims[/user] wrote:

I got a steroid injection in each knee yesterday and that has really helped not only my knees but my whole body. I can move around wonderfully.

You mentioned that you got a steriod injection not MTX right?  Perhaps you need a low dose prednisone not MTX.  As I understand it, Dr. Brown used prednisone to control inflammation especially during the first months of AP.  There are other options other than MTX that you may want to explore with your doctor.

Just a thought.

— whaleharbor

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[jims]

Thanks Lizz, Trudi, Tiff and whaleharbor for your help. Right now the doctor has raised my prednisone to 10 mg a day. I am going to think the methotrexate over for a while longer. The swelling in my joints is considerably decreased today, and I am really enjoying it. How often can I get those injections? Just a thought!!:)  jims

[Maz]

[user=1054]jims[/user] wrote:

The swelling in my joints is considerably decreased today, and I am really enjoying it. How often can I get those injections? Just a thought!!:) 

Jims,

Pretty sure no more than 2 or 3 cortisone shots into any one joint within a year, because it causes bone destruction. 🙁 If you decide on pred, do what you can to keep it at a max of 10mg or less, if possible. It's a beast to wean from with pretty bad longterm side-effects if used for too long, but feels ohhh so good, I know. Dr Brown would only use it in short bursts to help patients thru the worst of herxing or flares to keep the inflammatory barrier down.

With swelling that has been around a long time, it can be hard to draw fluid from the joint, as the synovium becomes thickened. Sometimes the swelling is more from this than fluid. Just wondering if this is why it was so hard to draw the fluid this last time? Dr H in UK recently told a patient not to worry, because a thickened synovium eventually comes down. I can attest to this in my left knee. Both my knees were swollen for 2.5 years, but my left knee is now almost normal…still working on my right one!

Peace, Maz

[jims]

Thanks Maz for the insightful response. You have given me hope that the fluid will eventually go away. The injections have really reduced the swelling, and my knees are about halfway normal. I received my Igenex lyme kit yesterday and I intend to get the tests as soon as I raise the cash. I really need to know, and from everything I have read, I don't trust anyone else's lyme tests. I've had a couple and the doctor(GP) just says results are negative and that is it. I wish Igenex took insurance but I will bill my insurance anyway afterward. Thanks again, jims:)

[mj47]

hi jims,
just wanted to chime in here about the mtx.  my husband has been on it twice.  he was dx with psoriatic arthritis in about 2002 or 03.  his knee flared really bad out of the blue one day.  they drained it & within days it swelled back up.  the dr. did tests on the fluid & dx-ed PsA.  he prescribed mtx.  it took several weeks, but it eventually helped tremendously.  my husband had mild nausea with each dose.  his psoriasis went away completely & his knee was 100%.  after a year or so, he felt so much better that he decided that he didn't want to take the medicine anymore.  he went off of it. 

he felt good for about 6 mos.  Then his knee flared again.  this time the dr. told him he would need a higher dose to get things under control again (as that is how mtx works).  it took about 8 mos of nearly twice his original dose to begin to get better.  he couldn't tolerate taking all the pills at the same time, so he split them into 2 days.  he was so ill those 2 'pill' days & it took about 2 days for him to recover from that…leaving only about 3 days before he had to do it all over again.  he got so sick from the pills that he couldn't even look at them. 

During this time, he went on a gluten free diet bcz his nephew was diagnosed w/ severe celiac disease.  after about 2 years of struggling through the mtx treatment (& yes, he took the folic acid too, but that didn't help much w/ the nausea), he just went off the mtx again.  i believe he weaned himself off this time.  it's been over a year now & he hasn't been on any meds. 

about 5 mos ago his knee started acting up.  but it acted differently…we wondered if it was bcz of the gluten free diet.  instead of just swelling up w/in minutes & staying that way, his knee got tight, then got completely better on it's own.  it did this about 2-3 times & then slowly got to the hot, swollen, angry stage.  the dr. injected his knee w/ cortisone (didn't drain the knee, just injected cortisone) & it got completely better.  that lasted for months. 

then he started getting pain all over (shoulder, back, jaw, neck, hands, knees, feet).  didn't have swelling anywhere, just pain.  this started about 3 weeks ago.  he doesn't want to go back on mtx.  we have an appt w his rheumy on the 20th.  we're going to try to push it sooner if possible because as of 3 days ago both of his ankles are hot & swollen & it's difficult for him to walk.  i'm not sure what is going to happen.  he too has been wondering about getting shots in his ankles to see if it helps all over so that he can begin minocin.  i guess we'll just have to see. 
but, i digressed a lot.

i really just wanted to give you his experience on mtx.  he believes that the sickness that came with it was not tolerable.  he said that if he didn't get so sick from it, he would've thought it to be a miracle drug because it made him feel like he didn't have arthritis.  his father (a dr.) said he has friends who have taken it for years with no ill effects.  i guess everyone's different.
i know when you're dealing with this stuff, any info is golden.  so, thought i'd share.
i hope things get better for you soon.
best,
j

[jims]

thanks mj, I appreciate you sharing your husbands experiences with me. I think in all the accounts that I have heard the fatigue is the most prominent side effect of MTX. I have a friend who has been on it for seven yrs (RA) and he was overall ok until just recently, now he wants to go on Enbrel, I told him about AP but his rheumy is solidly against it so he won't do it. It is encouraging that your husband had a relatively long symptom free period. I know that doesn't help now. Best Wishes to you and your husband, Jims:)

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