My Dr wants to start me on 15 mcg (think it was mcg) of Methotrexate because my CRP is at 2.9/ I know this is elevated but does it really warrant the Methotrexate? All other blood work other than the iron profiles are normal (anemia and get IV iron for that). I am not sure if a 2.9 CRP is that high or not. I am already onn 600 mg plaqunil a day. Pain levels have not changed with the plaqunil but did improve greatly with the IV iron I had a couple of weeks ago.
I really hate to go on the methotrexate if I really don't need it. Plus I am so sick of taking pills pills and more pills! Can't afford it either.
Hi Kimi,
I'll try to explain myself well enough to be understood but it is late, and I have a serious case of brain fog. :P
I can tell you that when my doctor suggested methotrexate, it was because the swelling and pain in my joints continued to increase significantly over a six month period. And it was impacting a larger number of joints too. He didn't run any new blood tests. He based his decision on signs and symptoms.
For CRP levels from 1 to 3 mg/L are considered "average" so I would say you are at the high end of average. Have you had other CRP tests? If so, is the value increasing?
Decisions regarding medications are tough. If you are unsure, you should speak with your doc again.
Carebear
My symptoms are pretty much the same as they have been for the last two years other than I was having exhaustion. The iron IV has pretty much taken care of that now and I am feeling better over all. I still have all my normal aches and pains but they are no better or worse than they have been for a long time. My CRP did go up from 2.5 to 2.9 between this and my last blood work.
I am going to call and talk to my Dr again. I just don't know if I want to go on such a strong med when my blood work is not really bad and I am doing OK symptom wise for the most part. I do have my really bad days and even a week or two but then the flares tend to ease up. I can handle that.
I also wonder if we are pulling out big guns now what happens if I get really bad? Right now it feels like we are pulling out the cannons to hunt bunnies. Save the big guns for the pirate ships. I see the Dr every 3 months with blood work before each visit so I am closely watched and feel that if things got bad with the blood work we'd most likely catch it right away.
I have to say that for me this last flare was resolved with the iron IV, strange but true. I think much of my problem was the anemia and not the sjogrens. Plus she did put me on nurontin and that helped a lot too.
I have had higher CRP before as high as 7.8, GP did not give strong meds at the time but advil and diet and exercise. Levels came done after 9 months to the under 3 level.
I think I am goign to call my Rhumy and do a re-think on this plan. But I think her concern was my CRP is creeping up and not going down with the plaqunil.
There are MANY natural anti-inflammatories which would do a better job and be safer. I know someone who has permanent lung damage from methotrexate.
Consider mangosteen juice... particulary Xango. It keeps my CRP below 0.10 ...things like bromelain or curcumin may do the same thing.
I can understand where you are coming from the meds, but the truth is your doc is basing his decision on the fact that your CRP is starting to go up. It is high normal range but will probably continue to rise. The plaquenil generally isn't enough to curb the bigger inflammatory issues.
Also, the reason you probably have the anemia is because Sjogrens can cause anemia. It affects the bone marrow and the way the red blood cells are produced. This means that your sjogrens is very systemic.
I took methotrexate for a few months but had to quite because of another health problem that arose. I was so mad when I had to quit because I was starting to feel so much better. I took 10 mcg once a week along with the folic acid to help curb the side effects of the methotrexate.
I can't say that I had any side effects but I have a picture of me at Christmas that year and I haven't looked that good since. I think that your doctor has the right idea. You sound like you are not doing as well as you think you are. I tend to sound like that myself many times.
I know that methotrexate comes in generic and isn't that spendy and it may totally change your life. If you start it do not sit and wait for side effects to happen as a person's brain can talk them into anything. Just start it and expect the best to happen. Do not panic. I used to do that when I was young and then I discovered that it was a waste of time. None of my worrying over things made any difference. My brain has learned to place things on a shelf to be taken care of by a "higher power" and life goes on. Go for it!!! Good luck. Irish ;D
Don't NSAIDS reduce inflammation too? Would be much safer.
NSAIDS. I am on Advil, taking 5 tablets twice a day. Has not changed the CRP.
Hi Irish! Been a while since I posted here. You have given me some food for thought. Yes the numbers have been raising even with the Plaqunil and Advil. Never thought that I could be more systemic. Humm, that does make since with the iron loss as we have not found a cause for it. They keep wanting to blame it on my periods as I am at "that age" where heavy periods are known to make a gal anemic and they don't want to believe me when I say that mine are not any different flow wise (sorry to the men at being so graphic) just farther apart.
They think I am not able to absorb a lot of nutrients as taking iron does not help at all and even got more anemic while taking, and low D levels as well. I am having a upper and lower scope in a couple of weeks to see if bleeding might be in my gut. Last one a couple of years ago showed inflammation of the gut both upper and lower but when tested for celiac, everythign is normal.
I have tested negative for SJS and every other autoimmune thing but yet I have all the symptoms and positive lip biopsies. Humm such a frustrating disease.
Kimi
kimi, Have them do a ferritin level if they haven't already done it. Also, when you go through some of the literature about sjogrens you will see them mention anemia as a symptom. I can't believe that your doc doesn't realize that the autoimmune diseases can halt the manufacture of red blood cells or at least decrease them.
Do a search of "anemia autoimmune disease" or some similar words until you find some info. I did that a couple of years back when I was having anemia and low ferritin levels. That was before I started the IVIG. I don't have the problem now and I think it is the IVIG that is helping.
I found lots of info about autoimmune and its effect on the bone marrow and production of red cells. I would guess that you are much more systemic than you think you are. None of us want to admit we have reached that point.
I have not been put on any oral meds because of my low t-cells. My immunologist wanted to try the very low dose imuran and I told him I would make a deal with him. I told him to let me try the plaquenil first and see what happens and if that doesn't work I would do the imuran. Thought I should at least try the plaquenil and give it a chance. After 5 years on IVIG I have some issues that are not resolving and only getting worse.
My ANA, SSA, SSB are all still very elevated. Heck, for the first time in my life my sed rate is waaay up at 18---always ran about 2-4 before. Soooo, I, too, am getting more systemic. Happens to the best of us!!! Good luck girl. Irish ;D
Kimi,
When you mentioned anemia, I did think about celiac disease, but I see you already tested negative for it. That was how my celiac was discovered...anemic, post menopausal, no signs of blood loss ( I too am sorry, fellas).
It does make sense that you are anemic if they already found inflammation. I just finished reading about "anemia of chronic inflammation" typically seen in patients with long-standing infectious and inflammatory diseases.
Back to the methotrexate...my own personal experience so far is good. I have only vague side effects and after five injections I can feel an improvement in my fingers already. ;D
If you do decide to start Methotrexate, you might want to start at a lower level. Therapeutic levels start at 7.5 mg. I was on 7.5 mg for 11 years for psoriatic arthritis (before they also diagnosed me with Sjogren's). The 7.5 mg helped me tremendously with joint pain and inflammation, although it took 4 months to kick in. It worked well for a number of years, but whenever the dr. tried to increase the dosage, my white blood cell count went too low (I seem to be unusually sensitive to this.). Finally I switched to other drugs b/c the Methotrexate at such a low level was no longer helping enough. I never had any trouble with lungs or liver problems, even had a liver biopsy once when this was being recommended, and it was fine.
I was very thankful for the relief that the Methotrexate gave me when it was helping me.
Just my thoughts.
Becky
Hi Kimi - if you do decide to go on MTX, there are options to take to help you deal with side effects. I have started injecting at a lower dose (12.5mg) than I was taking in tablets. It helps in 2 ways. By injecting, it bypasses the stomach so most of the nausea symptoms are avoided. It is also more effective at lower doses so it is kinder on the liver etc.
The injections are almost completely painless - really! I'm not brave - I also inject Cimzia and that stings, but MTX is very easy. Like Irish says, it can make a massive difference to your pain and fatigue, but more importantly, to your disease control and prevention of joint damage. It is a big step and not one to take lightly, but it could just be the thing to give you back some of your 'old self'. Don't discount it. Anti-inmflams will not prevent joint damage.
Hope you come to a decision you are happy with. Thinking of you, Ailsa
Quote from: Kimi on October 05, 2011, 09:11:24 PMLast one a couple of years ago showed inflammation of the gut both upper and lower but when tested for celiac, everythign is normal.
Kimi
Kimi, what tests did you have for celiac? Celiac tests yield false negatives, even on biopsy. Many pathologists aren't trained to interpret for Celiac. A number of samples need to be taken in specific areas and damage can be subtle, even at the microscopic level. Inflammation and nutritional deficiencies point to Celiac. It would be good if the biopsy samples can be sent to a Celiac Center for evaluation next time. Another thing they could do to help rule it out is genetic testing. If you don't have the Celiac genes, then it's not possible to have Celiac Disease. If you do have the Celiac genes, and you still have these abnormalities, they should keep retesting and watching it carefully. Anemia and low vitamin D are very common.
Exactly. I'm pretty sure my celiac was missed. At the very least, I am gluten intolerant.
Posting questions and my answers. I am so sorry so long in writing but ended up out of town for a couple of weeks enjoying a new grandbaby, before that we had a huge rummage sale and I was too beat to be on computer.
Another thing they could do to help rule it out is genetic testing. If you don't have the Celiac genes, then it's not possible to have Celiac Disease.
Had this done and an negative, so not celiac. They did a bunch of other tests as well and all were normal or neg.
I took the MTX today and am feeling crummy, not sure I will continue with it or not. I am wondering if I can take Tylonal with it? I have done drug checkers and some say yes and some say no, some say OK to use advil too but I was told no by Dr so will not do that.
Not sure if I have had a ferritin level done and will ask net time I go in.
Really not sure what course I want to go with treatment, all I really know for sure is I was the pain and stiffness to go away or at least be less. I want to know what normal feels like.
Kimi
If you are starting at the 15 I would ask if you could lower the dose to at least 10 mcg. Are you taking the folic acid with it to help waylay the nausea???
AFter thinking it over it dawned on me that you must have very low ferritin levels because you have been treated with the IV iron. Ferritin levels are hard to get back up. My levels were way down for a period of time and it happened all at once. My hemoglobin was also low which is to be expected.
I was put on 3 iron tablets a day and it was taken with on vitamin C tablet with every dose to help the iron absorb better. I would think that if you are eating a well balanced meal and don't have stools that float that you can be pretty sure that you don't have the celiac disease. The floating stools are a pretty sure indicator that there is a malabsorption process going on in ones body.
When the stools float it is because they are full of fat and fatty stools are a sign of celiac. My hubby is celiac and had the floating stools for years. I kept telling the doctors about it and nobody listened for a long, long time. Finally he really got sick and lost a lot of weight and bingo a new doc diagnosed him pronto.
Also, if a person has celiac and the floating stools and goes on the gluten free diet the fatty stools that float don't go away. Mostly because there is usually some damage to the villi in the small intestine prior to starting the diet. Many times there is healing but a residual of damaged villi that can result in the malabsorption and floating stools. The fat soluable vitamins are absorbed by the fat in the stools and expelled from the body causing the person to have a nutritional deficit. Good luck girl. Irish ;D
Ah, so having floating stools is a sign that you're likely deficient in the fat soluble vitamins A, D, E and K ?
I've been taking supplements of vitamin D for a year and my levels are still low - and I've had the un-submersible stools for at least half a year before starting them.
Great advice here about not taking celiac tests at face value. I'm certainly going to persue genetic testing for it after 2 blood tests and a biopsy a year ago showed negative, but those little buggers still wont flush. Dive, submarine, dive!
Good luck with the MTX.
Suzie
Hubby has the celiac and never had blood work done as it wasn't available when he got diagnosed. He swallowed the bullet. Also he had o folic acid in his system and the GI doc said that happens with celiac.
We have a son who had the blood work and it was negative. He had weight loss and was havaing so much gas, cramping, etc for quite a few years. I finally told him it was time to "give it up" and start the diet. His wife was going away for 2 weeks and he cleaned out the cupboard and got rid of the gluten foods.
He started the diet (which was no big deal to him cause his dad has been on it since 1978) and he gained 10 # the first month and felt much better.
I would caution people that occasionally a person without celiac will have stools that float. This is probably an occasional thing caused by eating high fat foods. Celiacs have stools that float pretty much all the time. This has been an interesting conversation!!!lol Irish ;D
Yes Irish, it's pretty interesting! Have you ever watched that show, You Are What You Eat, with the Scottish dietician Dr Gillian McKeith? Ew, she's obsessed with looking at people's stools to diagnose their health problems.
One more nugget of TMI - I read that people with celiac usually have large, soft pale stools that float. I wonder what,( for example, mentioning no names, hypothetically speaking, for reasons of scientific enquiry you understand, ahem), hard little stools that are always darkest brown, and always, ALWAYS, float, signify? And the person in question would dearly love to lose weight but doesn't, despite not consuming too much fat (is vegetarian, almost vegan, and shuns oil and butter in all things except a small bar of chocolate and maybe 6 almonds/cashews/brazil nuts daily)?
From today, I'm going to go gluten free and see what happens. Oh, I mean the hypothetical girl with the 3-flush poops is.
Oy.
Sorry for hi-jacking the thread, Kimi, but my new rhuemy is considering Rituxan just like you with the MTX, I really don't want to go that route if something else might help...
:-*
Suzie
I still say "the original mangosteen supplement." It will amaze you.
Malabsortion floating stools are not always pale in color. Depends on lots of things, but brown is also seen. Irish ;D ;D ;D ;D