Need advice-in a lot of pain!

[Sterlingroses]

I went off my meds (sulfasalazine and methotrexate) as they were making me sick and I was trying to be “clean” for my bloodwork and appt with Dr F. I have Psoriatic arthritis and my appt with Dr F isn't until the end of April. I know he likes to have patients off the meds but I don't think I can stay off much longer. My knees are swelling and painful. My toes and fingers are throbbing. His office sent me a kit to have the blood work done 3 weeks before the appt. Would it hurt to do the blood work now? I don't know what to do but I am in so much pain. I travel a lot for my job and have to be able to move! My knee fills up with fluid and it gets so bad I can barely walk.

Should i just go back on my meds for now?? I really need advice. I guess I can call Dr F's office in the AM to find out what to do.

 

Appreciate any advice

 

 

 

 

[lynnie_sydney]

Hi Sterlingroses – welcome to Road Back though sorry you had to find us and sorry that you are in pain.

Not sure what you mean exactly about wanting your bloodwork”clean”. If it is Dr F in Riverside you have an appointment with, then my understanding is that it is antibiotics that he advised patients to stop for 4 weeks prior to tests, not other medications. You can find a general letter from Dr F re this on the http://www.rheumatic.org site at the end of their in their FAQ section. 

Edit – according to some people who see Dr F, this advice has now changed. See their posts further down this thread. 

You are best to call his office and check both re the medications you have been on and when to get the bloodwork done. Best, Lynnie
 
[/color]

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[lizbeth]

Hi Sterlingroses,

sorry to hear your in such pain.  I am new here myself so have little experiece to help you with but was wondering if you could take an anti inflammatory.  This woin't modify the disease but should help with the pain.  Lizbeth

[Kim]

Sterlingroses,

I too am sorry you are in so much pain, but definitely you should call the office and ask them what to do so you can still function.

Take care….kim

[superperroRA]

(1)Dr. Thomas Brown was very clear.
A.P. (antibiotic protocol) = anti-inflammatories + antibiotics
You are not supposed to quit the anti- inflammatories until you are almost cured.

(2)Dr.F prefers that you be off the antibiotics, not the anti-inflammatories, on the first appointment

(3)Some anti-inflammatories alter the immune system (prednisone at doses larger than 5mg/day, methotraxate). Others like NSAIDS don't (or very little).

(4)I would take an NSAID + prilosec to protect the lining of the stomach.
If you have an especially sensitive stomach, you can take the NSAID in suppository form, which is easier on the stomach (that's what I do)

[Cheryl F]

It is not my experience with Dr. F in Riverside (or any doctor for that matter) that he would want a patient to discontinue current meds in an unsupervised manner.  As Lynnie posted, Dr. F used to advise patients to come off the antibiotics for the initial testing, I believe that is no longer his recommendation for patients who are already on the antibiotic protocol. 

But if you are in pain, that tends to indicate inflammation and inflammation leads to joint damage.  I think you need to stay the course and manage your pain and inflammation until Dr. F can provide a plan to decrease your other meds and transition to the AP if that is your choosen path.

Cheryl

[Randy]

You are receiving excellent advice here.

I don't think you said if you are already on any AP or NSAIDS?

I (too) was okayed by Dr. F. to continue taking mino and NSAIDs until I saw him for my first appointment. As you already have an appointment with him set up for the end of April, I would ruthlessly try to contact him (or one of his medical assistants) and get advice on what you can (still) take.

And on the very positive side, you are on the right track to getting better.  Congratulations! 

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[DragonSlayer]

Hi, Sterlingroses:

I am very much against taking NSAIDs for the entire family of 'seronegative psoriatic spondyloarthropies;' these are counter-productive as they increase intestinal permeability and these diseases are caused and exacerbated by bowel pathogens.  The long-term unintended consequence of NSAID use can be accelerated disease activity because these do not treat the cause of disease.

If You are HLA B27 negative, I strongly suggest being tested for celiac disease; this is very often an underlying basic trigger for PsA/polyarthritis and idiopathic or gradual onset of ReA.

You might be able to do a cleansing dietary regimen to help eliminate pain, or could try GLA (borage seed oil) and EFAs (Essential Fatty Acids–fish/flaxseed oils), fresh wheatgrass juice (4-6oz on empty stomach), and strong ginger tea.  Fasting is also very good.

You might also try and contact Dr. F to see whether there have been any cancellations or inform them You are suffering too much and clarify that he wants You medication-free.

Good Luck with everything,
John

[newbee]

I know what you are feeling , I am new at this and finally caved and took 10 mg of pregnisone 8.am tis morning. dont know if it will work , but my sis says it does . maybe for the short term you could try it , I could not walk or use my hands this am and downed two ibruprophen gelcaps and one vicodan . pain was better by 9 am took the pills at 6 am , am now functioning fully at 9.30 am . I hate drugs and have not used them at all over the years so this is new . but the ibruprophens sort of work if I take two .three or four work even better but my side started to hurt. had to back off. good luck and the others in this forum know alot more then me , I am sure they will help you find out what to do .
good luck
erika

[mschmidt]

I'm sorry to hear you're in so much pain.  I see Dr. F as well, and I remember calling and asking him if I needed to stop my Minocin before coming for my 1st visit.  I was told that if I already started AP, then I should stay on it–no washout period, and that he stopped doing that a while ago.  Absolutely you should call the office, and leave a message for him, his nurse, and his PA.  They are usually very good about getting back to me the same day, or within 24 hours.  Please call them asap because they're closed on Friday, and I'd hate for you to have to suffer through the weekend.  Having a lot of inflammation isn't good, and you should get that under control sooner than later–you shouldn't have to feel so terrible waiting another 2 months for your appointment.

Maria

 

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