All happening so fast

[katieb]

Hi Road-Backers,
I thought I would just check in because my aches and pains are changing (mostly worsening) so fast and a few questions keep rattling around my mind.
When I saw the rheumy on May 20th I had sore feet, stiff ankles and one painful metacarpal. She couldn't find 'soft tissue swelling' even though one index finger was swollen and wouldn't bend all the way. She diagnosed osteoarthritis and sent me away for 6 months (yes, months).
3 weeks later, by the time I got a letter saying my blood results were still the same (raised RF but all others normal), my hands were both swelling up and painful, and I was starting to get pain & stiffness in both wrists and knees (behind the knees making it hard to kneel down, and on the outer edges of the knees – does that ring a bell with anyone?) Went to my GP (who was still ploughing her way through The New Arthritis Breakthrough – not experienced in AP), who could clearly see my swollen hand and fingers, and didn't hesitate long before prescribing me the minocin, which I duly started taking on Weds June 11th. We agreed on the 100mg MWF as this seems to be a good starting point. Big celebration !!
I dare say I have been experiencing some herxing since then, but as my symptoms were worsening so fast anyway, I'm finding it hard to judge, but I'm certainly had some ghastly days where I seemed to ache everywhere (especially first thing in the morning), worst I think at the weekend. One hip and elbow now hurting also, as well as the rest !
Also, in April I was surviving on 1x400mg dose of ibuprofen daily and now I'm having to take 2 doses every day, and sometimes the maximum of 3.
What I'd prefer to do is stick on the MWF regimen but just get a stronger NSAID from the GP when I see her next week, and kinda stick it out and hope for eventual improvement.

Question – does RA often worsen this rapidly, or might it suggest it's not classic ? Or would this be a situation in which an IV like clindamycin would be prescribed ? I know you're not doctors, but has anyone experenced anything like my situation ?

God bless,  Katie

[superperroRA]

Katie, from your icon I see that you are a dog lover like me. This leads me to suspect Lyme. Lyme can trigger RA and greatly exacerbate it. Read everything Maz has posted in this bulletin board about her experiences with Lyme/RA. It will take a while since she is prolific, but you will end up 50 IQ points wiser from the experience. Since you are from the UK, I can tell you it will be like checking out Jeeves opinion on the matter. I think the woman eats fish for breakfast, lunch and dinner!

Read also posts by “Susan lyme/ra”. She is also very smart

[Joe M]

[user=467]katieb[/user] wrote:

Question – does RA often worsen this rapidly, or might it suggest it's not classic ?

Hi Katie,

It is different for everyone.  My wife's started in her shoulders, would come and go, and then one day she felt like she got hit by a truck and couldn't get out of bed.   I also know a lady whose RA started in her elbow and wrist, and has mostly stayed there for 20 years.  Some people are perfectly fine until one day they wake up and can't move.  There is every variation in between and no two cases are alike.   I don't think there is anything unusual in what you are describing, if it is indeed RA.  Superpro makes a good point about possible lyme.

Joe

[katieb]

Thanks Superperro & Joe !

In fact I've suspected Lyme all along, as I spend a lot of time outdoors and in the woods (!). Maz (who is a most amazing and admirable authority on alot !) replied to my earlier post 'Blood results for Lymes Disease' with a fantastically helpful response in which she suggested I ought to get started in AP (which God be praised I now have), whether or not it's Lyme's (this makes us 'lumpers'), rather than delay that by trying to get a positive Lyme's diagnosis. It should become apparent later if there are 'coinfections'. I think that's the gist of it !

I never thanked you properly for that Maz ! Thank you – you are just amazing and admirable ! Thans also to spacehappa and Ron who also replied to that post.

So now I am on the AP and just trying to keep tabs on what happens to build up evidence one way or the other.

There is a LL clinic in the UK in Hertfordshire who offer a range of LD tests (the most expensive of which costs

[Maz]

[user=467]katieb[/user] wrote:

It wasn't a very good start when the path lab rang my GP to say they weren't going to test my blood sample (Elisa & Western blot I think, so probably not useful anyway), as I hadn't noticed a rash, and there were 'too many false positives in the general population'.

Katie, we've got similar probs this side of the Atlantic…although it's a little easier to get the standard Elisa and Western Blot tests, the problem isn't that there are too many false positives, but that there are too many false negatives.

The trouble with these standardized tests is that they just test for antibodies and not the organism (the spirochete) itself. Because the antibodies have actually been found to stick to the spirochete, they aren't always found free-floating in the blood. To actually see the spirochetes, a darkfield microscope of extremely high levels of magnification is needed. These specialized microscopes use a dark background and require a luminescing stain be used on the slides and applied to serum samples that literally make the spirochete glow, but are so expensive and specialised that most labs just don't have them. In any case, many people just don't produce enough antibodies against Lyme in the early days and these usually build over time. So, often a series of Western Blot tests are more revealing than one done earlier in the disease, especially if the number of positive bands increase with time.

To send to a specialised lab here in the US, the costs are pretty comparable to the one you found in Herts 🙁 , but some people feel it worth the investment to get a definitive diagnosis with a more specific test. Most Lyme Literate physicians (LLMDs) all agree, though, that any test for Lyme is just a confirmation of diagnosis for Lyme, because the most revealing and accurate gauge of infection should always be based upon clinical presentation of symptoms and patient history of possible past exposures. Not everyone gets the rash, either. By some estimates, only 40 to 60% of people ever develop a rash and, if they do, they're often in places that people don't even notice, like in the scalp, under the breasts, on the back, back of thighs, in the groin, etc. 

This may or may not be any comfort, but I worsened significantly in the early months of antibiotic therapy. All my blood markers for inflammation increased and reached very high levels and this was reflected in my condition. This is pretty typical, according to Dr Brown, who often observed this phenomenon in many of his patients. He felt it was a very good sign that the antibiotics were reaching their target and causing increased inflammation due to the hypersensitivity response. After about the third month, things started regressing slowly and I've been on an improvement trend since then…a little up and down, but the longterm trend has been one of improvement.

Sounds like the 'positive' side (said wryly, as there is no 'good' side to getting Lyme or a rheumatoid disease), is that if you test positive for it, then at least you will have an 'in' for getting IV antibiotic therapy, if you need it, which could give you a good jumpstart to AP. Not an easy decision to make, though…as it's a bit of a crapshoot that the tests come back positive, even with more sensitive testing.

So great you've got an open GP willing to help you with this, Katie. At least you've started and are on your way! It's generally felt that the earlier one starts, the faster the response. It's just these early days/months that can be so challenging.

Peace, Maz

 

[katieb]

Thanks Maz !

There is a lot of very useful info there !

I think I will ask my GP to do bloods for inflammation etc next week, that way we can keep tabs on what's happening.

Meanwhile I'll get on to the Herts lab and ask more details about the tests they do, and how reliable they think their results are. I do know that they have clients from all over the world including the US !

So glad you have improved so much !

God bless,  Katie

[spacehoppa]

Sorry about the flaring Katie, but hurrah on getting on the minocin so quickly!! You'll be so glad about that a few months from now. In the meantime, though, it sounds like you're going through the wringer, which I'm sorry about.

RA often suddenly seems to take hold and makes your whole body feel inflamed and sore all over. And of course, you could well be herxing big time. It is scary to have such awful days though, I know, and you need to be able to live your life whilst you're waiting for the minocin to work.

I would say that if you're already maxing out on the ibrupofen, it might be worth switching to anti-inflammatories (as they're stronger and last longer), but be sure to take a stomach protectant with it, such as Losec.

Thanks for the link to the amazing hospital in Hertfordshire by the way. I had a good look at the website, and may well contact them myself once I've finished having babies.

*Cough* – I have to whisper this but, this morning I got a very feint positive pregnancy test!!!

[katieb]

That's great news Ruth !

I'll keep my fingers crossed for that to become a strong positive result for you !

Thanks for the support and advice. It's because of that support from you and all the other roadbackers that I've just returned from walking the dog, with sore feet and stiff knees, in the beautiful sunshine we have here this morning, with a big smile on my face !

Good luck with the pregnancy !

God bless,  Katie 😀

[Rosey UK]

Hi Katie

I'm in Stalybridge, Cheshire. I can ring you if you like. I have RA with other connective tissue problems. I have been on doxycycline since last October, know what you mean when you're not sure of  herxing or pain from inflamation etc.

if you send me an email with your number and a good time to call I will.

Best wishes

Rosemary

[Rosey UK]

Ruth

Thats great news well done !!and I will keep my fingers X for you.

I am so happy for you

Love

Rosemary :roll-laugh:

[katieb]

Hi Rosemary,

Great to hear from you. Amazing the 3 of us all being in Cheshire ! I am going to be busy this week as my mum is coming to stay tomorrow, for a week. But once she's gone I'll get back in touch and maybe we can have a chat about progress !

Till then, take care !

Katie   😎

[Maz]

[user=467]katieb[/user] wrote:

So glad you have improved so much !

Thanks, Katie….and so glad you're out and walking your lovely dogs with a smile on your face! 😀 Stay in touch and let us know how things are going, now that you've started AP. Don't be worried if it's a little bumpy in the beginning…it's pretty par for the course.

Peace, Maz

[katieb]

Yes I am determined to keep on walking, even if it's a bit of a hobble. I used to run with Pepsi (the brown dog aged 8)) 3 or 4 times a week – but she doesn't care whether I'm running or walking – as long as I keep throwing a stick. That's also a challenge but OK as long as it's a nice lightweight one !

I am lucky to have a great hubby (who retired in Feb at 60 – not sure this is what he had in mind for his retirement !) who walks Maya (the black/white dog) who is only 3 and a bit more of an effort to cope with.

All good fun ! 😀

Many thanks Maz.

Katie

[whaleharbor]

*Cough* – I have to whisper this but, this morning I got a very feint positive pregnancy test!!!

Spacehoppa!

Congratulations and God bless!  So I'm sure I'm not the only one who can't wait to learn if “we” are having a boy or a girl.  Do keep us posted!

— whaleharbor….self-proclaimed auntie whaleharbor that is…:dude:

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

[marg]

HI Katy

This may not be useful but when my daughter developed RA 2 1/2 years ago,  sudden, severe, she was prescribed Methotrexate and took it for 3 months before starting AP.

The MTX did help very much in bringing down the inflammation ( also her hair started to fall out). She stopped it when she started AP and after a few weeks getting the dose adjusted ( to what you're taking) , she had very quick, good results. We wonder if the MTX may have helped by making it easier for the Minocin to access “the target”- and of course, it was likely fortunate that she started AP so soon. It may be that an good anti- inflammatory does help the Minocin – and the patient- at least until the swelling and pain comes down to a more bearable level.

Hope you have some relief soon. Hold on!

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