Husband Newly Diagnosed - Not Sure GP is Enough

Bones, joints and muscles
1

Hi. Hope I'm posting this in the right spot.  My DH has spent the past 6 months trying to get a diagnosis and being bounced around from doc to doc. 

His RF has been tested twice during this time, and was 88 and 66. After insurance company complications, he was able to find a GP that ordered blood panel, chest Xray, and full abdomen US. See, in addition to full body severe pain, he has shortness of breath, dizziness, cough, chest pain, leg weakness and heaviness. GP said "oh, I though you may have lung cancer, but apparently you have RA that is trying to kill you." His xray and US showed "nodules or cysts" all over his organs.

He starts on Methotrexate tomorrow, and the GP said see you in July. That's it. We feel like it's not enough. How would you handle this? Does that feel right? Feels like it's not enough.  Thoughts?

2

Some RA meds don't start working for three or more months, but I would be seeking out an RA specialist for advice and treatment.   A GP simply isn't trained in these conditions.

 

3

Thanks so much. He said he doesn't believe in any type of pain meds, other than a strong NSAID he prescribed, but the pain almost unbearable for him. Every single bone and joint is in pain.  We will call them on Monday to ask for a referral. With the complications he seems to be having, it's time to see a specialist. And where we live that can take 3-6 months to get in. 

4

I agree, it's not enough. A referral to a rheumatologist is needed asap and a confirmed diagnosis. I have an excellent GP but so much of RA is outside his experience. Delay can increase the risk of damaged and deformed joints.  Regular blood tests are needed also when you start methotrexate - before July! 

​Whereabouts do you live? I'm guessing you're  not from the UK?

5

MTX works wonders for the right patients, may or may not work for your husband.

Has been a life saver for me now for the last 12 years and have had no really serious side effects, even got through double hip replacement, with no bad infections.

How big a dose has the Dr started him on and how often?

I take 35mg once a week, which is a very high dosage by injection, but started of on 5mg for 3 months, then 10mg for 3 months, slowly increasing over the years, as they discovered my monthly liver tests came back as normal, which I am very grateful they do.

My blood tests are ESR and CRP, can be very high at their worst,  RF is negative, as is genetic tests for psorastic arthiritis which is first cousin the RF.

Taking the MTX in tablet form did not work for me, was only taking up a part of the dosage, again took many months for the Dr's to discover why they were getting no result with ever increasing dosage, and still blood tests results were not dropping.

You also should have been given a pesription for Folic acid to take the following day, 24 hours later, as the MTX does damage to the Vit B, in your bloodstream, and the folic acid replaces that.

Do not get too worried, the MTX is considered the gold standard for RA, but there are many other drugs in the rheumotologists arnesal and if the MTX is ineffective they will try some of those.

I have been given over the years many different drugs, they have discovered that my system does not like sulfur drugs, ltching, hot flushes that never go away, high blood pressure, dangerously high, so that has restricted my drugs I can be given.

Also have survived a battle with cancer in my past so that also restricts the drugs I can be given.

Best wishes Lyn

6

I was diagnosed 18 months + ago, So far not one med has worked, DMARD or biologic.   I exist on celebrex and tramadol now.   without them I'd join Elvis and leave the building I'm afraid.

7

Well - after a comment from a PCP like that - I think I'd be changing my PCP pdq!!! It is also NOT good enough to say "see you in 3 months" when he has just put you on methotrexate. That needs monitoring with blood tests preferably every 2 weeks until the patient is stable when the blood tests can be changed to monthly. It is also kinder to start the patient on perhaps a short course of steroids to reduce the pain a bit in the meantime since mtx can take up to 6 months to work. 

Lyn has said the rest. 

8

Hi, You're right. Not in the UK. We are near Seattle,WA. I also am concerned with his associated symptoms right now of terrible breathlessness on exertion, dizzy, chest pain, sore lungs.   

9

Hi. Thanks for all the great info.  This is such a new situation for us.  They have him starting this morning at 15 mg (6 2.5 tablets)  No Folic Acid. I asked the pharmacist and he pleaded ignorance, said if the doctor thought he should have it, he should prescribe it.  

10

Hello, I can understand your concern. Lyn is right about the folic acid. Has your GP arranged blood tests? They are important. Methotrexate is a powerful drug and needs close monitoring. I took it for about 4 years with Humira (Adalimumab) and more recently Benepali (Etanercept) which kept my symptoms fairly well controlled but the Methotrexate has now been stopped as it has been associated with lung fibrosis and the Benepali has been withheld due to chest infections which have been resistant to antibiotics. I now seem to have turned a corner and hopefully the fibrosis is reversing and the chest infections resolved. I'm not telling you this to scare you but so you know they come with significant potential side effects. Both of these drugs affect the immune system. Of course my joints flared up so I've been taking oral steroids until I can hopefully restart the Benepali. Regarding the exertional breathlessness and chest pain, is it definitely related? I would suggest you to get another medical opinion and early Rheumy appointment.  6 months is a long time to be in such pain. It must be very difficult for you both. Keep strong. Carol (England)

11

Poor guy (your husband, not the PCP).  Methotrexate does take a while to start working effectively.  Ask the PCP for prednisone.  It is not good to take it long term, but it should really help till the methotrexate kicks in.  If PCP is not willing, take husband to emergency during a bad pain flare.  They might give him some prednisone there.

12

15mg sounds OK, great idea to take on a Sunday morning, WEEKLY, not DAILY, that way you remember to take it.

HOPE the Dr has made that clear, people have done themselves a serious mischief by mis-understanding how often you take MTX.

My night is Friday, that way if i have any side effects I have the weekend to recover, I do have a little bit of more achy joints, and extreme tiredness the following day after taking.

Your CHEMIST is an IDIOT, he would know that the folic acid and MTX must go together for your health, protecting himself from being sued if offering the wrong advice I suspect, so offers none.

You should be able to buy folic acid across the counter, or maybe a health food shop, but your Dr should not have missed it.

Painkillers, ---- Panadol Osteo a good long acting pain killer, and tell you husband he does need it, it will make life soooo much better to relieve that pain, pain like that really grinds you down.

13

( writing from uk)

in my opinion your RA should be treated more aggressively than this. Get referred to a rheumatologist. I also have lung damage from RA and was referred also to lung consultant. 

15 mg methotrexate is a relatively low dose of 1 dmard, ( I m on 25 mg)but guidelines in uk say to use more than 1 dmard to begin. They have missed early diagnosis so this needs to be tackled more urgently. He may even need a biologic ( which is working for me) but I suspect you d only get that via specialist. 

In the months to get a referral to specialist  your GP could increase dose PLUS folic acid essential( check this out on websites like NRAS or arthritis research. ) press for an urgent referral. 

14

Dr. has no tact at all. And the lack of blood test plans was troubling.   Thank you for the information on that. 

15

Thank you for the great information.  I agree that it's more urgent than the GP seems to be acting on this. When you lie awake at night making sure your DH is still breathing, then it's not something to just follow up on in three months.  We will push for this. 

16

Just a quick update.  I really appreciate all of the help! 

I called my husband's GP to ask for a referral to a rheum specialist.  The GP seemed to think it was okay to prescribe methotrexate without any follow up blood tests for 3 months.  It's too soon to see any improvement, but my husband is still very short of breath and dizzy on any exertion.  So I called the GP office, and the staff is going to email the doctor and ask if he would please refer this out.   Wondering what we should do if he refuses.  Took us a few months to get into this GP.  My husband said last night that the GP treated him like he was "doctor shopping" for pain pills, and even though he never asked for them, the GP actually said "narcotics are not the answer."  

17

Hi there, regarding the chest pain and breathlessness on exertion can I suggest a cardiac cause (angina) needs to be ruled out. Sorry to throw something else into the pot and it may be quickly excluded but  something to consider. Might you be able to present at an emergency department? Carol (UK)

18

Thank you, Carol.  I'm getting to the point where an ER visit may be the next move.  The GP should have done some breathing tests, and ordered some cardiac testing.  I think he didn't really consider that "your rheumatoid arthritis is trying to kill you" is not a very helpful diagnosis.  It scares me to see my husband look like he will pass out whenever he leans over, or walks up stairs.   We may have to  do something drastic.Thank you.

19

No.  Get a rheumatologist.