Had a good few days...then...

[beccafullcircle]

Hello everyone, with all your posts I went ahead and bumped up the Warfarin as my doctor said not too and had almost a full week of so much more energy, less joint pain etc. My INR remained at 3.5 to 3.2 and now unfortunately I am starting to pull back again as the INRs are lowering. I am unable to self test due to here they do not allow you to have a machine, it takes a prescription and my clinic said no to the request of the hematologist.

The last few nights I have had a unique kind of headache as I get them often but they have actually woke me up in the night. Pounding headache that caused me to be disoriented for a short time until I realized I was awake. My balance was so off, I had to hold onto the bed. I go soon to the APS specialist in Portland and am hoping to find more answers. The fatigue is creeping back in as my INR's I know are decreasing again but they wont allow me to take more. I had to take two rounds of antibiotics from a lung/sinus infection so my INR's jumped up and now again, going down.

The burst of energy before I started falling down again were so much fun. I got so much done and felt so happpppppppy again, yet I always am even on difficult days but it was so special to feel energy again.

My doctor says I have to stay at 2.3 or 2.5 and so I'm frustrated...I don't think they know much of APS.

It's better higher, not sure what to do till I go to the specialist...I keep praying nothing will hurt me until the blood levels get confirmed...my dad passed away on Warfarin and I'm wondering that if his blood was simply too thick too and they did not control the INR level?????

Could this truly be effecting and cause something worse if my INR's are too low as they have me??

[Manofmendip]

Hi Becca.

They should take note of how much better you feel with a higher INR.

remind me where you are from?

Dave

[beccafullcircle in reply to Manofmendip]

Hello Dave,

Yes I am in Oregon

Thank you for your response

I have good people watching over me, yet the simply do not have the specialty of Hughes and I know for sure by the way I feel that I am too low of INR, I need to be at a 3 or higher

A few times before I would tell my husband wow I feel so good today and then get checked and my INR was always in the 3 range. They would then tell me to half a pill.

I take 7.5 ml of Warfarin each day with a half a pill twice a week to achieve a 2.3 range.

I believe I need to make the half pills whole pills in order to be at a 3

Becca

[jetjetjet]

Take it to them- it's a battle , but don't take NO for an answer---- i have lived it myself and am still fighting the same battle my friend J and casey here in N.H. -- keep in touch

[jetjetjet]

How are they testing you ????????????????????????????????????

[daisyd]

Hi, be very careful about increasing your Warfarin by yourself

Blood can cause damage too if it goes to thin.

Can you change Doctors ?

I think I have this right, the anticoagulant clinic want you to be able to self test.

Pehaps if to speak to someone there they will talk to your Gp again.I have my warfarin dose from the anticoagulant clinic

Hope you get some help with this

[suefessey]

Hi Becca, i was told at the anti-couagulant clinic, that guide lines are to lower INR levels. My response was to say "They won't be lowering my levels, i have had a PE at 3.6 Ian then went on to tell me, i will have to be reviewed.

[GinaD]

Here in the States docs seem to be quite relunctant to see INRs of over 3. Have you tried asking to switch to an injectible? Many on this forum report an improvement of symptoms and the half life or the drug's efficacy is much shorter. it seems difficult, but as I found when I was bridging fior surgery, it is really easy and quick.

[Jomack]

God they really know nothing about our condition do they!!! I feel for you so much I feel so frustrated for you! Who do they think they are playing with your life! Sorry I will get off my hi horse now!! You need to insist and start shouting louder. I wish you all the best. Never forget its your life they are playing with. Take care. Xx

[Lure2]

If you could tell them how much better you felt with the higher INR. Do not change the dose yourself though. It is difficult to predict the outcome of that. I agree with daisyd.

I wish I could help you. You will manage.

Kerstin

[jetjetjet]

hay there - how are you-- Lab rat -- to funny ---love your wit ---------Casey and I

[Lure2]

Well said as Always! You really knows what you are speaking of!

Kerstin

[beccafullcircle]

Thanks to all that replied. I feel so much common ground here on this forum. Very peaceful feeling and I have to thank each one of you for lending an ear. Humble thanks. The last two days has been amazing seriously I feel so unbelievably good. Today I stopped as I walked to take a shower and had to tear up cause it hit me, "I feel like a normal person today". It stopped me in my tracks. Feel like running again yet I wont considering but I even was able to stay up till later last night and go on a date with my hubby to our 30 year class reunion to see our old friends w/out feeling like a slug or dragging a leg and my brain was quick again as I shared humor with all our friends. I fell asleep so thankful. I did not sleep well though, I was awake a lot in the night so I simply prayed and prayed, so it was good use of time. This morning when I rolled out of bed, I did not ache as much, I walked right outside w/little pain in my joints even and watered my garden and sang worship songs. I'm baffled. Tomorrow I go in and check my INR's again and am going to insist for an appointment w/my doctor not just the coumidin clinic because I know my blood is higher level...I did self administer another half a pill on Friday. I can feel it...My diet is so consistent that it has to be the extra half that has continued to kick in. Sorry if that makes all of you concerned for me, yet I do not feel I have much choice, as my blood is simply too thick. I wont go through another TIA or PE or DVT....Life is too short and I have so much left to accomplish. I'm not a good patient, I'm a good shaker and mover Thanks to all today....Becca

[Lure2]

Hi Becca, I was so glad to read what you had experienced. Yes, it must be that the INR is higher. Over 3.0

But you must take it easy. The doctor must trust you so tell him about the 1/2 tablet on friday and I am sure he will help you to have a stable INR-number. It takes 2 - 3 days for the warfarin to work if you make changes in the amount.

Best wishes and I am so glad you feel better!!!!!!

Your APS-friend Kerstin

[beccafullcircle in reply to Lure2]

I will indeed let them know, I am headed in the clinic today to share the need for this extra dose

This morning I woke up with joints struggling again, so to check to see the INR level will be a good note for the day.

Good to always hear from you Kerstin, please enjoy your day that God has given and know that I am thankful to hear from you Big Big smiles your way

[Lure2 in reply to beccafullcircle]

Thank you Becca for your lovely words and I wish you Good Luck today!

Kerstin

[Tranquility1]

Hi Becca!

I'm with you. I live for those days when I have that burst of energy and feel like how most people feel all the time. I get so much done during such periods. it's heaven.

I am absolutely jealous that you are in Oregon. Portland is one of my favorite cities. Nicest people too. I had an apartment in Portland for a while and would travel back and forth between the coasts every month for a few years. My doctor thought I was irrational at the time when I would tell him that I knew I had to walk on a treadmill within a few hours of getting off the plane or I would feel sick and my legs would start to throb (as if a garden hose was kinked). Now I know why.

I just looked up your weather for today. I hope you get a chance to enjoy it.

Hugs and hang in there. I truly believe I enjoy the little things much more than most people because of the health issues. I cherish every second. It sounds like you do too.

All the best!

[beccafullcircle in reply to Tranquility1]

Thank you for the kind words, encouragement is needed all the way around, so you too have a terrific day today. Yes Portland is a great place to spend time, I sometimes go and get a hotel w/my beloved husband and tour around the water front and shop at all the fun Saturday markets and hippie stores. Your example of a kinked garden hose is baffling as to how EXACTLY this feels. I will surely remember this, thank you for the insight

Have a great day today.

BEcca

[Tranquility1]

The kinked garden hose analogy. Have you ever been in the yard and the sprinkler doesn't work? You walk back tracing the hose to find the kink. As you get closer you hear the sound of some water escaping past the blockage. When you pick up the hose to undo the kink, you feel the vibration the kink causes.

When I describe the kink in the hose, it's not a feeling of an actual kink in my veins. What I feel is a vibration deep inside my legs (usually lower calves and feet). It reminds me of the water trying to pass the blockage in the hose. Forever, it's made me feel like there is a blockage in my veins. Often when I get this vibration, I also get the pins and needles in my feet. If I don't move, it keeps growing in strength.

If the blockage vibration in my veins is due to sitting for too long, it's my bodies reminder to get up and move. While I used to ignore it until it got painful, I now know that it's a signal that shouldn't be ignored.