What Labs?

[Time_of_my_Life]

Hello All!

I completed my round of clindy IV's last Thursday and am doing well.  I was really tired the week of them but not so bad this week.

My question to you is:  I have not had labs done for well over a year.  I fired my Rheumatologist and have not found a new one yet.  I am going to go to my GP for a checkup and would like to request labs done to check how my RA numbers are.  I'm not sure what tests to ask for.  Also what other tests should I be getting done on a regular basis?  Could anyone help me with this?

Thank you!
Lori

[Sterlingroses]

I am meeting with a new rheumy next Monday and would like to know the same thing. I have had so many tests done. I don't what's necessary and what isn't

I will wait to see what these folks recommend for you.

[spacehoppa]

Hi Lori,

The blood tests I get done regularly to check my inflammation levels are ESR (erythrocyte sedimentation rate) and CRP (C-reactive protein). With both of these tests, the lower the number, the better.

You could also ask for an RF (rheumatoid factor) test. Again, the lower the number, the better.

I also get full blood counts (FBC) done, as well as liver function (LFT) and kidney function tests (KFT), to make sure I'm not getting side-effects from the medicines.

HTH

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

I am going to go to my GP for a checkup and would like to request labs done to check how my RA numbers are.  I'm not sure what tests to ask for.  Also what other tests should I be getting done on a regular basis?  Could anyone help me with this?

Hi Lori,

The labs my LLMD has me do on a regular basis include the following:

CBC (complete blood count)

Metabolic Panel (including liver and kidney function tests)

RF (rheumatoid factor)

Anti-CCP

Cardio-CRP (more sensitive than SED rate, though some docs do both)

Other labs, like ANA may be useful, too, if positive. Re-testing labs that are negative (say, anti-CCP and ANA) probably aren't worthwhile on a regular basis, though should be checked at intervals to see if they have turned positive, which can happen over time. The labs that need regular monitoring are the CBC and metabolic panel and anything that relates to your RA that is positive. Watching these positive labs, over time, helps in determining if AP is working or if tweaks in protocol are needed along the way.

Most conventional docs don't see the value of re-testing RF and anti-CCP on a regular basis, the markers for RA, as these are just seen as prognostic indicators for disease severity and worsening at the outset (and how aggressively to treat RA with conventional meds). When on AP, however, it's useful to watch these labs, as they do improve with treatment over time. 🙂

Lori, were you able to get hard copies of all your labs from your old rheumy? If not, these might be valuable in terms of a baseline comparison for what labs were originally positive in your case and what they are doing now. Getting hard copies of all labs as you go are really useful to keep in a folder at home and to watch the longterm trend.

Hope this helps?

Peace, Maz 

 

 

[Time_of_my_Life]

Thank you Ruth and Maz 🙂  That helps me tremendously!  I do need to get my records from my fired Rheumie (i love calling her that haha).. I don't have those so do not remember where my numbers were 4 years ago!

I have been extremely tired lately and notice that I am losing alot of hair.

I'm not sure if this goes along with taking antibiotics or not. 

Any ideas?

Also Dr. S just emailed me in reply to my question as to whether or not I should change my mino regimen since I have been on the 100mg/twice a day for 2 years. He said to stay on the same regimen.  Why do some pulse and others like myself take it twice daily?  I'm a bit confused about that!

Thanks!
Lori

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

I have been extremely tired lately and notice that I am losing alot of hair.

I'm not sure if this goes along with taking antibiotics or not. 

Any ideas?

Also Dr. S just emailed me in reply to my question as to whether or not I should change my mino regimen since I have been on the 100mg/twice a day for 2 years. He said to stay on the same regimen.  Why do some pulse and others like myself take it twice daily?  I'm a bit confused about that!

That's a really good question, Lori, and one you should put to Dr. S. My best guess is that you started out on methotrexate and in that sort of instance the mino is acting more as a DMARD than an antibiotic. One needs a functioning immune system when on AP, as the tetras don't kill the bugs, they just disable them….the immune system does the actual killing. When folk are already on DMARDs, the goal is to get them stabilized on mino first, then gradually wean the other drugs over time. Once that is acheived, it's then possible in some cases to lower the mino to a pulsed, low dose. It could be that as you're currently going through a flare that Dr. S. just felt it better to stay on the higher dose, which would afford you a bit more immune-modulation right now. When you're stable again, you could then ask him if you could lower your dose to see how you go.

As you've been flaring, it's possibly you're losing hair due to this…but it would be good to get a handle on what your labs are saying, first, before putting it down to disease progression or something else.

Some folk have commented that when they started AP, they lost hair for a while and it's hard to know if it's the antibiotic or due to early worsening. What does seem to be true for most, including myself, is that as I improved, my hair loss stopped…and I was still on the antibiotic. So, I'm not wholly convinced it's just the antibiotic…more to do with inflammation (from flaring or herxing), malabsorption when unwell (of essential nutrients)….and may be partly due to the chelative nature of the abx, which bind to minerals in the body.  When you get your next labs pulled, you may want to just ask if your doc will also check your thyroid function if it hasn't been done recently, as an imbalance with this (and other hormones due to peri-menopause), too, can cause hair loss.  

All the best, Lori!

Peace, Maz

[mschmidt]

Lori,

So nice to see your smiling face on the forum again!  Sorry to hear you're dealing with some hairloss but, glad to hear you're moving on from an unsupportive doctor–that must feel liberating!  The labs I get done monthly include a complete immunological profile (ELISA), which includes the following tests:

dsDNA, SSA, SSB, SM,RNP, Chromatin, Histone, CCP, RF IgA, RF IgG, RF IgM, Mycoplasma IgM, Mycoplasma IgG, ACA IgA, ACA IgG, ACA IgM, Thyroglobulin ABS, Thyroid Peroxidase ABS.  (all markers for Lupus, Drug-Induced Lupus, Sjogrens, Rheumatoid Factor, Anti-cardiolipin Antibodies, tests for Hashimotos Thyroiditis, and MCTD)

Other tests include a Complete Urinalysis, Ertythrocyte Sed Rate, Complete Blood Count, Automative Cell Differential, Liver Function tests (ALP, ALT, AST, Direct Bilirubin, Total Bilirubin, Albumin), Total Protein, Calcium, Chloride, Carbon Dioxide, Phosphorus, LDH, Uric Acid, Kidney Funcion tests (Creatinine, Urea/Bun, Creatine Kinase), Glucose, Potassium, Sodium and Magnesium.  Special Chemisty:  Immune System Function Tests (IGA, IGG, IGM), Complement C3 & Complement C4 (monitors protein abnormalities contributing to increase infections or increase in autoimmune activity), ASO (strep titre), CRP (C-reactive Protein, which monitors inflammation), Hormones:  Free T-4, Free T-3, TSH, DHEA, Cortisol, Testosterone, Ferritin. 

Finally,(:shock:) Basic Metabolic Panel w/EGFR Glucose, Bun/Creatinine Ratio, Sodium, Potassium, Chloride, Calcium, Carbon Dioxide, Fibrinogen Activity (Clauss), Partial Thromboplastin Time, Activated, and Prothrombin Time-INR, PT, and Sed Rate by Modified Westergren. 

Sorry for the long-winded response.  I think my labs are the extreme case of a doctor being thorough (and I'm glad, since I get clindy iv's every 4th week).  As far as your hairloss is concerned, the first thing that I thought of was hormones–in particular, your thyroid.  It's pretty common with hypothyroidism, and it can also occur with hormone abnormalities.  I hope this helps!

Take care,

Maria

[Time_of_my_Life]

Thanks again for the response Maz.  You could very well be right.  I will have to ask Dr. S what his reasoning is behind keeping me on the daily doses.  I am on synthroid for my thyroid.  Last time I had it checked it was on the low end of normal?  But I've read some opposing views on what the low end should be.  I will also be turning 29….er 47 on Friday so it could indeed be hormone related.

Maria – Thanks for your input!  That is alot of testing!!  I don't know if my Dr. would do all of that even if I asked him! I'm gonna write them down though and see what his thoughts are on them.  I really question if my synthroid is at the right amount for my thyroid…reason being I have a friend on it too and her Dr. switches up her amounts quite frequently.. At least 3 times a year.  Mine has not been changed in 20 years.

You have been a great help in figuring out the tests that would be helpful for me to have done.

Thanks Again!
Lori

[JBJBJB]

[user=212]Time_of_my_Life[/user] wrote:

I have been extremely tired lately and notice that I am losing alot of hair.

I'm not sure if this goes along with taking antibiotics or not. 

Any ideas?

Lori,

I just posted this information  http://www.rbfbb.org/view_topic.php?id=4400&forum_id=1 and perhaps you could check your hormone level. Losing hair and fatigue, muscle pain could also be part of hormone imbalance. Hey, I just learned all these information from the doc's office today. Now I am “selling” them to you. You owe me $15 (my copay was $30) if you feel better. Hahaha….Just kidding.  JB 

[Time_of_my_Life]

Thanks JB!

Its definitely worth checking out.  Your $15 is here waiting for you.. come get it! 😀

Lori

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